woman seeking mother

transplant life

noreply@blogger.com (seekingmother) — Thu, 23 Aug 2012 23:47:00 +0000

Dear family and friends,

I apologize for the very long delay between updates. My last communication on Aaron's condition was on the day of his first transplant anniversary, July 22nd, over a year ago. In that email, I documented Aaron's on-going struggles with his immune system, graft versus host disease (GVHD), medications, viruses, and the continued uncertainty that colored our day-to-day living.

On this year's anniversary, I'd hoped to be able to share that Aaron not only remained cancer free but was also fully recovered from the many complications he faced post-transplant. When we reached July 22nd last month, I had no wonderful news to impart and I found myself unable or perhaps unwilling to further detail these miles of our journey.

While my mind still guards my reflections and limits my words; for Aaron's sake, I want to make sure that those who know and care for him and our family at least understand the essence of where he is right now physically and emotionally so that there is support for him as he moves forward on this path.

Between year one and year two, Aaron had continued and worsening GVHD, medication complications, and one hospitalization with pneumonia amongst other symptoms and issues. A few months ago, Aaron believed his lymph nodes were growing and brought it to his doctor's attention. At the time, his transplant team was not suspicious, but this summer, Aaron pressed them to investigate. What we have learned is that Aaron has, indeed, relapsed with leukemia, even though he has significant GVHD. In most cases, the presence of GVHD is a guard against relapse, but for some reason Aaron has considerable GVHD, but not enough graft versus leukemia (GVL).

He is in the process of stopping all of his immunosuppression so that we can give the donor cells an opportunity to operate at full force. We are hopeful that Aaron can manage the increase in GVHD that results from unleashing his sister Sarah's immune system. We expect Aaron to be off all medication by the second week of September at which point, the next step will be determined and implemented. It will likely be a donor lymphocyte infusion (DLI) of Sarah's T-cells. The desired outcome would be that this infusion of cells ramps up the graft versus leukemia effect. Essentially these steps are to salvage the transplant and put Aaron back into remission.

Many scenarios have been proposed and we are considering all of them. Aaron will be gathering second and third opinions over the next few weeks as well as working closely with his transplant team at Dana Farber. I will do my best to keep all of you more informed as we move forward.

I'm sure that Aaron would love to hear from you. While he remains optimistic, he is disappointed. We are not at the beginning of the end, he reassured me, just the beginning of a new beginning.

Here's to our new beginning....

anniverary

noreply@blogger.com (seekingmother) — Sat, 23 Jul 2011 01:35:00 +0000

Today is the day that was meant to mark a shift in our lives, a day when we could put cancer behind us once and for all, and rejoice in Aaron's radiant health. A need to commemorate this day pulls at me today hour by hour, now finally overriding my silence. When I consider how many months have passed since I last updated our ongoing story, I am overwhelmed by how much has been left undocumented.

Examining our life, both what is visible and what is hidden underneath had become a habit for me, and a solace. I allowed myself to do it, often needed to, going as far as to imagine that chronicling the details could make a difference in the narrative-- as if the storytelling process was a deep and rhythmic spell that could govern the way this tale unfolded.

The version I want to write is not the one I will share today. In my story, I'd be living mindfully and Aaron would be cancer free and restored. There'd be a pattern in our story with solid answers. We'd be passionate and committed, not worn. Our life renewed, Aaron rejuvenated, myself finally at peace, not a zombie who is too fearful to turn a pen to her own life because she no longer believes that she can write a convincing tale of redemption, of how this transplant was our triumphant lesson toward a greater understanding and appreciation of life. The compelling tale I'd hoped to write of transformation would be uplifting and rise above the physical and emotional shocks of these past months.

Instead, the story beats have come as they have from the beginning--unpredictable and wild--even to the doctors who often claim never to have seen the condition before, who have no idea what to do next. Everyone seems to have suspicions or theories, but no one solutions that will actually make a difference. The transplant life is all consuming; the complications never-ending. Not a day goes by where we feel that this life is at all in our own hands and no matter how much I have tried to settle into and accept this, even retracting a painful distance from the act of documenting, from my words and my voice and my emotions to the point where I feel foreign to myself, no moment-by-moment analysis, no crossing borders into the past or the future, just staying put right here in this long day where Aaron is going on four months since eating normally and 45 pounds lighter--no, everything feels unrecognizable to me no matter what I do.

Each morning I awake to see what has emerged with a blossom of hope that Aaron will be less vulnerable and frail, and within minutes I must remind myself that there are no answers, not yet. The transplant is a salvation and also a prison. We are refugees in this transplant life. People who do not have a home. We wander each day, reading other people's stories, standing on their examples, seeking wellness from doctors who do not always hold us in golden hands. I go to sleep each night and wake each morning fearful that Aaron will fade away in those quiet hours. He tells me that he is bullet proof, but as I look at his trembling hand beside my own in those early morning hours, I find myself closing my eyes to the whole ordeal for one moment and then another. But this morning, I begin to remember the years of chemotherapy, the first time and then this most recent, and time of the transplant procedure which now seems so far away, twelve long months. I recall Aaron's insane itching upon release from the hospital and the aneurysm scare, and the laryngitis and it all comes back to me.

Yes, it was soon after Aaron lost his voice in the fall that I seemed to have lost mine as well. The complications arose one after another quickly and without any predictable pattern and then our beloved Onni died suddenly and unexpectedly and I allowed myself to forget that words are like magical beings who can shift frightening creatures into hopeful sprites of red and yellow, who will spread outward into an open field and bring me home to a place of refuge and dreams and my life with my incredible son and husband.

So here we are once again with my attempt to walk you along our path. Though I cannot do justice to the myriad experiences, lessons, and discomforts of these months, I can give you an overview and promise myself that one day I will write more fully. Shortly after discharge from the hospital last summer, Aaron began a unique vaccination trial which inoculated him with his own CLL tumor. It is believed that this will enhance the much desired graft versus tumor effect that leads to a cure post transplant. Aaron completed nearly the whole series, receiving more vaccines than other participants as they were able to harvest enough tumor to make additional vaccines; but he eventually had to pull out due to a persistent and ultimately recurring neutropenia. Neutropenia is a serious complication as it makes the body susceptible to infections. It was determined that the most likely cause was Rituxan, one of the medications that Aaron took to secure his remission. This late onset neutropenia has recurred multiple times since the transplant and it is unknown when the recurrences will stop. He is monitored frequently but it requires us to maintain restrictions to prevent exposure to infections. We don't know when he may be walking around with no defense in place.

Our dreaded, though not unexpected, adventure with graft versus host disease began in the fall as well but did not erupt fully onto the scene until January when Aaron's immunosuppression post transplant had been tapered down to very low levels. Within days of the last decrease, Aaron's immune system officially became 100% Sarah, and then she took over. We had prepared for this scenario mentally but it is one thing to prepare for these possibilities and another to live them. With GVHD, the cells of the stem cell graft attack that which they think is foreign which is essentially all organs and organ systems of the host body. It is very much like having an autoimmune disease. Aaron soon found himself on levels of immunosuppression above and beyond what he'd been on previously with no relief. GVHD is one of the leading causes of death in transplant patients, along with infection and recurrent disease, and while Aaron dealt with each shift in his body with strength and resolve, it was a challenge for him not to become exhausted by his efforts. He meditated and harnessed his energy, "I am you and you are me, we are one", he reminded his body each day, speaking to Sarah's cells, encouraging them to make peace with their new home.

It was this battle with GVHD that allowed our most current struggle to remain undetected for over 6 weeks. When Aaron's GI issues and weight loss escalated in April, the suspicion was for worsening GVHD. Biopsies confirmed GVHD in his GI tract and so additional immunosuppression was added to the regimen. Aaron GI symptoms worsened but despite the lack of success with this approach, more drugs were added. Although GVHD was suspected, multiple stool cultures were performed to exclude an infectious etiology. It was a last minute visit to a local infectious disease specialist that brought us the answer that we needed with a positive stool PCR result. Aaron had contracted the norovirus, the most common form of viral gastroenteritis. Neither Sash nor I were sick, and as Aaron hardly leaves the house, our suspicion is that he contracted this infection from the hospital. We quickly learned that this is a very common scenario for transplant patients and that it can take many months, up to 14, for patients to pass this virus.

A struggle soon emerged at Dana Farber between the infectious disease team and transplant team over the best course of action. The ID team insisted that Aaron come off the immunosuppression medication immediately so that his body could fight the infection. The transplant team insisted that they could not pull the drugs and would have to taper slowly to make sure he didn't suffer from steroid withdrawal or a damaging GVHD flare. The ID team postured that Aaron would not live long enough to worry about GVHD. And so we began the taper and are still in the process of lowering the medication levels. Aaron has been back and forth to Boston more times than we'd imagined at this point in the process for evaluation and supportive care but he is still very much within the grip of this virus. No one knows how long it will take for his T-cells to rebound. We can only wait and watch as Aaron's clothes slip further off his body and he grows further weakened by something that any of us would have passed in a few days time. I have never seen him more fragile and he admits that he has never felt worse.

In the midst of all of this, another complication arose. Within a matter of a few days, his left eye was suddenly compromised. He had a dark cloud in the center of his field of vision. At first his team imagined it must be GVHD of the eye, but in the end it turned out to be a problem caused by the high doses and long term use of steroids. A collection of fluid had developed behind his retina. He was monitored to see if there would be any resolution once the drugs were decreased, but in the end, he needed laser surgery as his right eye had also become affected. The procedure was completed last week and I am happy to say that his right eye is resolved and his left eye should improve within the next few weeks. This was our one success after a long stay in Boston.

Today is a day of reflection and though the writing does not come easily, I am happy to be giving this year further thought. We'd been told that this year would be one challenging ride and I can easily attest to this being the case. When we heard this pronouncement from the transplant team, we naively expected that all we had to do is get through this one year and then we'd have our lives back--the survivors walking away with a smile and a cure. It is clear to both of us now that what we bought is not such a neat and tidy package. In the end, I'm not sure how much we really believed that all of the loose ends would be tied so perfectly or else we would have jumped to this transplant option much sooner in the game. But still, I think that we'd hoped.

Now I understand that Aaron is a long way from a return to a normal life. We've recently heard stories from patients and doctors alike (they apparently save these stories for those who are in our position) of a two to three year period of challenges and complications that is one day followed by a sudden relief of issues. Perhaps this is our course and it has required us to reset our expectations. Aaron's immune system is on its own course. There is no way to measure how competent it is and we have to be very careful that he not contract another seemingly small virus that could set him back in the way this one has. We must remain in our new normal for a bit longer.

Each day we continue to learn that we must embrace the uncertainties in our life, that we can only see as far ahead as today, and yet still find a way to believe that we can not only manage the hurdles that are coming--and they keep coming--but also live with respect and joy for what we do have: each other, right here in this moment with our illnesses and issues, strengths and weaknesses, hopes and desires and fears and needs. And one amazingly special little boy who has delighted us even on our darkest days. There is so much learning in this process and so much to come. And today, we must accept all of this fully and learn to let go of preconceived time lines. In this acceptance, we find our way to celebrate where we are today.

While we aren't where we'd wished to find ourselves at the one year point, it could definitely be worse. Aaron could be dead, relapsed with cancer, or hospitalized long-term with complications that may not have a resolution. Aaron has survived a difficult year and I believe we have our cure in hand with Aaron still 100% Sarah. Her immune system is hanging in there despite a beating with an arsenal of drugs. She is here for the duration. And the real life Sarah is out to celebrate the event with us along with some other family members and this too is something we give thanks for on this special day.

I also want to once again praise and bless those who helped us last year and this. A transplant life is an isolating one by nature and having those who stepped forward was a much needed reminder that we are not alone.

There is one more piece of news. As many of you know, conceiving Sash naturally was a truly a miracle for us after years of struggle following Aaron's diagnosis in 2004. As with the first time, the artificial route once again held no promise for us as I struggled through last year trying for a second with no success. Friends and family thought I was nuts to add this endeavor to the mix and I finally let go of my need for another child and was even excited to raise Sash as an only; then another miracle blessed us. I have been keeping as quiet as possible on this subject, but after extensive testing on the guidance of a genetics counselor for any potential sperm related abnormalities(Aaron has endured a lot of medications over the years), we learned that the baby I am carrying is healthy. We also unfortunately learned that the placenta is compromised from a random mutation occurring post conception, completely unrelated to drug exposure or other factors. This condition may mean some complications for me later in the pregnancy, but our baby girl should arrive safe and sound here in November. G-D willing.

We look forward to hearing from family and friends as we continue this journey. I hope to be able to do a better job keeping the story accessible to all.

Happy Birthday to Aaron, and Suvi, our surviving dog, and our friend, Jude. Celebrate this blessed day.

fondly,
Michelle

enchantment

noreply@blogger.com (seekingmother) — Tue, 25 Jan 2011 02:14:00 +0000

You cannot steal enchantment, you must be invited. I don't imagine it was my grandmother who told me this, but these past few nights when I lay my head down on my pillow, I once again hear stories in my mind. My voice is slowly returning--still broken in many ways--but even in this faint whisper I feel promise after so many quiet months where my only company has been Aaron's restless body beside me; the continued assault of details and concerns about our life in the midst of this transplant; and the image of Onni falling dead at my feet on a beach side playground.

I have been unable to sit and make sense of things the way I once did and have chosen instead to dissociate from my thoughts and words. My mind is a castle in ruins, its shape not entirely unfamiliar, but still merely a reminder of what it once was. I see fragments of who I am in the relics---memories, hopes, dreams, qualities, companions, experiences I used to have and the ones I still desire--but there is so much more that is no longer visible amongst the chambers in all states of collapse. Each day I study the outline for evidence of what was built and destroyed. Last night I began again with what was lost and then allowed myself to consider what may have been found in return.

It was then that I heard the stones breathe my stories into the air, and with them, the pulse of suggestion.

I want to believe in castles and mysteries and beauty. I want to believe in the power of intention to recreate and transform and restore. I want to believe in a deep enchantment that will smooth and soothe and capture me fully. My voice is coaxed out, stones slide into place and evoke spiral stairs, stone vaults, a gable pitched roof, the battlements I may need to see my way through this siege, and I begin again

lies

noreply@blogger.com (seekingmother) — Mon, 04 Oct 2010 21:11:00 +0000

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.

You won't.

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.

The Transplant

noreply@blogger.com (seekingmother) — Mon, 13 Sep 2010 16:44:00 +0000

This is an entry I wrote at 3:30 am the night of the transplant. Sasha was awake that night with a mild fever remnant of his virus and lay curled against me in bed. I was stirred by the transplant experience and unable to sleep so I grabbed a notebook and pen as I had done many times that week and just began to write. Several people have asked if I might share our experience. My handwriting is a challenge for me to translate but the piece went something like this.

We come to this day with a desire to devour life. This day is our new beginning--the one we have waited many months to call our own-- the hour that will change us in ways I cannot predict.

We come to this day full of anticipation and yet I don't know what to expect as I walk through the door to Aaron's room. Will he be meditating, reading, watching television, talking on the phone? Will he be colorful and animated or lost in sleep? We have been building toward this moment for so long, still I am strangely hesitant to step inside of it.

But we come to this day to claim the future, I remind myself, and it is time. The door opens then closes behind me. I find Aaron exhausted after a week of procedures, chemotherapy, examinations and interruptions throughout the day and night. I try not to look frightened seeing him in this way, laying so still with all of the equipment strapped to him, but he looks half his size suddenly in that bed as if a child, my child, and I want nothing more than to take him into my arms and immediately restore him.

A smile blooms across his face when he sees me. I can't get up to hug you, he tells me, then laughs. But I'd like to. I sit beside him on the bed and take his hand. For months I have spoken of spiritual journeys, desperate for Aaron to see this experience as something more than a medical procedure, but today these words do not need to be spoken. His soul is palpable in my palm.

Jake joins us, then the young Rabbi, who functions as the hospital chaplain. Together we wait for the cells and for Sarah and Aaron's mom to arrive. The time for the infusion changed throughout the day and settled on a time later in the evening. But just as soon as it was decided, it was changed again. Jake and I were already on our way to the hospital when we received the update and we called Aaron's mom to let her know that the transfer would be hours earlier and that they should come to the hospital. Her phone was off. Fortunately Jake later tried Sarah's phone and eventually reached her. Now they were rushing to make it in time, as once the cells arrived, they were meant to be infused.

The three of us speak quietly and intermittently as we wait, our eyes continually drawn to the clock. Minutes pass slowly and also too quickly. I see the drenching rain through the window and hear voices outside the door, but the room holds us separate from everything else that is occurring in this world. Today is only about our unfolding quest.

The atmosphere shifts when the cells arrive. As the nurse comes through the doors, I can see the bag small within her hands. For a moment, I almost believe it is more of the same--medication, saline--but even before I register with my eyes that it is indeed the cells, I am altered in their presence as if stripped naked before them.

She wants to hook up the bag and begin but we ask again if we might hold off another few minutes to allow Sarah time. The Rabbi suggests we say a prayer over the cells. The four of us hold this precious bag above Aaron's chest and each offer our silent blessings. I lose myself in this tiny package and speak to Aaron in my mind of love and health and renewal and transformation: of beginnings.

With the infusion of these cells, we are traveling to the origins of life. My eyes blink open and draw Aaron closer to me. This man that I love, pale and drugged, has been waiting for these cells and now they are here. He is either going to live or die and these cells are the thing that will keep him in this world. He will be found in those cells. I believe this. And my life is in those cells. It is not just his life I am fighting for, it is ours. We don't know what our new existence will look like, but what a miracle it is to be given this chance to look at our life and say yes, thank you, I want more. This is what I want--life, life, life to its fullest essence. And here it is in my hands waiting.

Perhaps I too had thought this to be a clinical experience, a procedure, not something that would move me spiritually. I feel my pulse loud in my ears and struggle to stay standing as if I'd been touched by a great healer and might swoon to the floor. G-d is present.

Sarah and Louise arrive before the nurse can hook up the bag and we take an opportunity to further pray over these cells. The Rabbi offers a blessing for us to share. Holy One, we gather this day holding a source of new life in our hands. As we bless these stem cells, we thank you for the donor who so graciously gave them; to give another chance at life. As these stem cells flow into Aaron, we trust in your care and blessing this day. We pray that Aaron's body be fully receptive to this new day of birth and as we go forward. Strengthen and bring comfort to Aaron's body, as each day will hold its own challenges. We beg for peace in body, mind and spirit, so that good energy will flow at the dawn of each day. Bless all those in Aaron's circle of love and support. Nurture their compassionate hearts and illume their lives so that your light be ever present to Aaron. Walk us into the future and we pray in gratitude for your blessing this day. Amen.

And with this, the Rabbi takes his leave from the room and the nurse secures the bag to the pole, then sets the process in motion. As I sit beside Aaron, I am hypnotized by the dripping of the cells into the tube. I am so alive in these moments and so desperate, I feel everything acutely. My senses are heightened. I believe I can feel the cells against my fingertips as I take the tube into my hand and trace along the surface to where it enters Aaron's body. I study the journey of these cells and think of our journey here over the past seven years and how much it has taken out of us and how much it has given us, and though I never wanted it; here it is.

Life is in flow in these moments. It flows from this bag from Sarah to Aaron, from myself to Aaron, Jake to Aaron, his mother to Aaron and all of us to each other. Yes, life is in flow and so incredible. I hadn't thought of the magic of this, only the necessity. That absolute need for this to happen so that Aaron could continue. For months I have felt that I would be at the end of my life if Aaron's life ended and I was struggling so hard and I didn't even quite see just how much until now as I watch those cells moving toward him. Now I am in the tube with the stem cells gifting them everything of myself. Now I am watching Sarah exclaim when the first of the cells pass into Aaron's body. Our eyes meet. Those beautiful green eyes that I have seen looking into my soul since we were teenagers. This man, ready for life. And here is comes.

And now I am floating in G-d's palm and I am grateful, so moved by the cells sailing so steadily on their mission that I want to sing, but can't. One word slips from my throat: Hallelujah and I grab my phone and play this song. Aaron listens but I can see that the music is not moving him the way that it moves me. If only I had made a transplant play list--but who knew? After my song concludes, Aaron makes his choice. He plays It's a good day by Ice Cube. Just waking up in the morning and gotta thank G-d. I don't know but today seems kinda odd. ..... I can't believe, today was a good day.... Today I didn't even have to use my A.K. I gotta say it was a good day.

While Jake thinks this selection is very pimp for a transplant, the nurse admits that it is a first. But Aaron seems satisfied and has assumed control of the accompanying sound. I surrender and remain entranced by the cells. Eventually chatter between the others unfolds and I want to shush them all and ask that they appreciate the reverence of the occasion but then decide that we will each take from this what we will.

When I bump into the Rabbi in the lobby, I share with him how much I had wanted to remain in the spiritual realm and not slip into the mundane and that I wished he could have remained in our presence as an attendant to the divine. He laughs and reminds me that this is the way with ceremony for most of us, that we start with our heart full of intention and ritual and then things degenerate into family time.

Though the talk shifts to news of lives not dependent on what happens in this room, still there is a question outstanding. Has Sarah collected enough cells today so that we are done or will she need to do a second collection tomorrow for a follow-up infusion? Though no one wants this outcome, I secretly begin to consider how I might better plan a ceremony worthy of such an occasion. Perhaps I will have songs all laid out and everyone will say something special to Aaron. Perhaps I might even convince Aaron to talk more about his own experience of the process. Before I can get too caught up in the possibilities, the phone rings. The news is good. Sarah's young body has done its job. Aaron and Sarah are both relieved.

After the last of the cells have found their new home, Sarah and Louise say their good-byes. Jake and I sit with Aaron for several hours and notice how much his face has flushed with color and life and confidence. When Aaron declares himself ready for bed, we also say good-night. It is difficult to leave him tonight but as always he wants me home so that I might hold this baby on my lap should he need me. Jake and I are carried through the dark streets by something other than our own feet. Jake tells me that he considers himself to have always been lucky and that he transferred some of that luck to those cells which are taking root in Aaron. I believe that Aaron will one day feel these prayers more than any of us realize.

We come to this day with need and hope and desire and friends and family who stand beside us.

It is a good day.

chimerism

noreply@blogger.com (seekingmother) — Sat, 11 Sep 2010 23:09:00 +0000

I am not the type of person who flips to the end of a book before I decide whether or not I am willing to settle into the narrative and yet when it comes to this story, I find myself desperate to know the ultimate conclusion. As I lay sleepless at night contemplating and refining my role in service to the main character of this tale, I wonder what it will take for me to get my hands on a copy of the divine author's outline? If only the author will tell me how these characters fare this challenge, I promise I will read, no savor, each moment of every scene and chapter no matter how mundane or harrowing.

One of my favorite writing teachers once shared that you should always leave the reader high up on a pedestal where they cannot get down without you. Whomever is crafting this story of ours has this particular technique down perfectly. The scenes unfold day by day and I am always left wondering what next. We have mini-resolutions at the end of sections: completing two chemotherapeutic regimens; hospital admission for conditioning; the stem cell collection and transfer; release to the hotel to fend off skin driven insanity; finding our way home in search of comfort and answers; and finally better management of the itching and laryngitis, nausea, sinus infection and fatigue.

But while symptoms improve, they do not entirely disappear and new issues continue to appear to keep the story rolling: discomfort from the tumor vaccines; painful legs and feet; and consistent diarrhea which may be the first sign of GVHD. And still the greater story has so much further to develop before we are released from its pages. Sometimes I wonder if we will ever be released from these pages, but I have to believe that as much as this transplant will be forever intertwined in our life story, there will be many novellas for us where the content exists outside of these days or the back story references are few.

For now we are tightly in the grip of this unfolding drama and one of the chapters these past weeks revolves around the chimera and bone marrow biopsy results. Dr. Soiffer told us a few weeks ago that they would love to see Aaron cancer free and engrafted at 100% but that anything over 90% would be acceptable and would not warrant any changes to his immunosuppressant regimen. As of August 23rd, (Day 32), Aaron is 90% engrafted by peripheral blood analysis and 93% by bone marrow. By H&E histology, his bone marrow biopsy taken that day showed a single lymphoid aggregate that is suspicious for minimal involvement of CLL.

When I first heard the news I was disappointed because I so much wanted to just hear that we had attained full engraftment and that we were done with CLL once and for all. But even if this had been the news delivered to us, a transplant is a dynamic process and people who are fully engrafted can lose their graft just as people who are not fully engrafted can increase their donor percentages. The fact that Aaron's own immune system is still functioning should not be a surprise. Aaron had what is called a non-myeloablative stem cell transplant (NMT). Essentially this means that a conditioning regimen was selected to weaken but not destroy Aaron's bone marrow and immune system before they infused Sarah's cells. Sarah's transplanted cells are engrafting alongside Aaron's own immune system.

Chimerism is a topic I discussed in an early post. It is the condition where cells in an organism come from two different individuals. In the best case scenario, the end result of a bone marrow transplant is that the blood and marrow cells come from the donor while all other types of cells come from the patient. Complete chimerism means that all of the blood and marrow cells come from the donor. Mixed chimerism means that some cells come from the donor and some the patient. Complete and mixed chimerism induced by a stem cell transplant can be determined by cytogenetics, molecular genetic and immunological techniques so that transplant physicians no longer have to rely simply on graft versus host disease to indicate that the donor cells are settling in.

After a transplant, the change from the patient's blood and marrow cells does not occur all at once and is slower after a non-myeloablative than a myeloablative. Chimerism analysis is important for monitoring post transplant outcome and for determining appropriate therapy after transplantation. Early patterns of chimerism may predict either graft versus host disease or graft loss. Dr. Soiffer will perform chimerism analyses frequently over the next six months to ensure that Aaron's donor percentage continues to increase. We want to see him move from a state of mixed to complete chimerism with no evidence of his DNA in the peripheral blood or marrow as this indicates a much better prognosis for a cure. Hopefully this will happen in a few months.

As much as I would like to be delivered without mystery, there are no immediate denouements to this story. Dr. Soiffer refuses to speculate on what Aaron's status looks like in terms of patients he has transplanted other than to say that the numbers usually do increase to 100% over time and that Aaron looks good. While Aaron is used to tight measured language from his doctors, I am always in search of the wise crone on our path, the one with the magical incantations and crystal ball that can reveal our future. Beyond waiting for her, I can pursue my answers in medical journals. What I have learned is that "mini" transplants are essentially synonymous with mixed chimerism in the early months post transplant. It is natural that the recipient and donor cells coexist in the marrow space as Aaron's bone marrow was not completely destroyed.

Though the presence of any potential CLL may frighten us, it should not discourage us. CLL is not curative with chemotherapy alone which is why Aaron's cancer returned after our first attempt several years ago. The cure for CLL is the infusion of Sarah's cells which are meant not only to replace Aaron's bone marrow but also to seek out and destroy any CLL that may have been left behind. This is called graft versus tumor effect or graft versus leukemia and this is our salvation against a relapse of the cancer. GVL is usually a by-product of GVHD and this can be very dangerous, even fatal, so the management of Aaron week after week is critical. So while Dr. Soiffer is guarded with his knowledge as if it is a secret we are too young to know, he is the magician in this story who will yield his powers as needed. We are told that he is exceptionally gifted with manipulating GVL and GVHD, bringing patients back from the brink of death and into a cure. And so we must put our trust in him and in our faith, as we continue on without a map.

A few years ago, Aaron and I were looking at treadmills and we considered ones that have the vision panel where the runner is placed on a particular course and you can see them as they make progress down the roads and over the hills. The imagery is meant to motivate you to keep going. We are in the early stages post transplant, now Day 51, and we have so much more of this quest to full health. Marking our story in words affords me a glimpse of our movement through this process even on the days when I feel like we have been on the same page for weeks. Because no matter how wound up I am in a particular struggle or feel that I can bear no more, eventually the moment arrives, the page is turned, and we are given a distant view of where we are heading before we are propelled into the next scene.
We must make our way on this journey one day at a time and I know that we can go higher or lower just like Sarah's cells. Let's hope we all rise and enjoy ourselves along the way as much as possible. And even if a package arrives with all of the main points neatly laid out, I will continue to remind myself that stealing ahead to the final sentence will only diminish this story.

voice

noreply@blogger.com (seekingmother) — Sun, 29 Aug 2010 23:49:00 +0000

Though Aaron has always been more of a listener than a talker, he prefers this to be by choice not design.

Over the past three weeks, Aaron has been dealing with another symptom his transplant team says they have never seen in one of their patients--hoarseness.

Typically Aaron is always a little bit hoarse and so the initial strain to his voice which began our last week in Boston didn't overly concern us. Aaron believed it was due to all of the antihistamines he was taking for his itching as they left him with a dry mouth. Naturally I began to wonder if there was something more symbolic to this loss of voice. Could it represent a loss of personal power or identity? Did it point to an inability to convey a certain message? Was Aaron unsure how to put into words what he wanted to say? Dr. Soiffer did not agree with Aaron's assessment and I was never given an audience for my theories. He scheduled Aaron for a consultation with an ENT as soon as his raspy whisper deteriorated to a partial loss of his voice.

Aaron is no stranger to an otorhinolaryngology asssessment, having been worked up by an ENT at Mass Eye and Ear back in 2004 when he was first diagnosed with CLL. His doctors then did not believe that Aaron's usual vocal quality was normal and were concerned that there might be CLL involvement of the lymphoid tissue of the oropharynx. When no diagnostic abnormalities were identified, they recommended that Aaron see a speech and language pathologist to teach him how to speak without straining. As a boy, Aaron did meet with a speech therapist when his mother realized that he could not pronounce certain letters. He fondly relates those months of therapy and the lovely hot chocolate he was often served. But as a surgical pathology fellow on service at Mass General, he could not imagine finding hours to spare for such luxury appointments with his intense schedule, nor in the years since completing his training, and so he has continued to misuse and abuse his vocal cords.

On Wednesday, Aaron met with an ENT, Keith Saxon, at Brigham and Women's Hospital for a complete ear, nose and throat exam including another rhinolaryngoscopy. The appointment began with a treat--two medical students who came in masked and gloved to take Aaron's medical history. It brought back memories for Aaron of being a bumbling medical student-- as if Aaron was ever anything but insanely competent. They asked him many questions about his hoarseness that Aaron felt were appropriate for working someone up with this symptom but in the end they seemed to miss the pivotal point when presenting the information to Dr. Saxon.

After several minutes of the students rattling off the onset of the symptoms, Dr. Saxon reminded them that Aaron had just undergone a stem cell transplant.

"Oh, that's right," one of the students replied.

"That's very pertinent, don't you think? I do. When someone comes in post transplant with hoarseness or dry mouth, the thing that I think about first is graft versus host disease. Don't look at the hoarseness in isolation," he reminded them.

Our lives have been so much under the umbrella of the cancer and now the transplant that it was almost strange for me to imagine that it would be anything other than the primary focus. Aaron explained that he had not yet had any signs of GVHD of the skin or stomach that one might expect with GVHD but of course it remains in our mind as a possibility.

Dr. Saxon asked one of the medical students to spray a topical anesthetic up Aaron's nose to decrease his gag reflex so he could scope him more easily. He then gave Aaron a basic head and neck exam, looking in the ears and mouth, under the tongue, back of the tongue-- first just looking then with a long mirror to see down the back of his throat. He looked up his nose with a light. Everything looked perfect. He took out a small lighted fiber optic scope and probed in both nostrils to determine which would be the best route to view the larynx. Aaron said it was uncomfortable, but not as bad as it was the first time. Dr. Saxon looked around for a few minutes while Aaron watched the exam on the monitor. The doctor pointed out a great deal of inflammation of the larynx, and a granuloma on a vocal cord. The mucus membranes of the oropharynx were dry and the mucus sticky.

The diagnosis is dsyphonia (acute laryngitis) with a granuloma on one of his vocal cords. Swelling in the vocal cords can result from several causes. "I haven't seen GVHD present like this but I can't rule it out," Dr Saxon offered. He said he would send a letter to Dr. Soiffer and let him know what the findings were and leave it up to him to decide how to deal with it. Because he hadn't found anything else concrete to account for the hoarseness and he also wasn't convinced it had anything to do with the antihistamines, he wanted to keep GVHD on the table. We are hopeful that it is not GVHD related but realize it is definitely not out of the question.

Another possiblity could be gastro-esophageal reflux disease and GERD is a very common cause of hoarseness. In this condition stomach acid comes up from the stomach into the esophogus and into the throat irritating the vocal cords and the throat itself causing inflammation in the voice box. Dr. Saxon asked Aaron if he had any history of reflux and Aaron told him he did not but that he was currently taking zantac as an H2 blocker for his itching protocol. "Well, despite the fact that you're not reporting any symptoms of GERD, I still think it's possible and I'm going to put you on prilosec because it is a stronger antacid. I'm also going to give you a medication to increase your saliva and moisten the mucus membranes. "

One of the medical students then asked what the relationship was between the granuloma and the hoarseness. Dr. Saxon began to explain that it may have no relation to the hoarsenss. It was then that Aaron brought forward a piece of information he had neglected to mention--that chronic cough that coincided with him beginning the high dose steroid protocol in March. "Chronic irritation. That's a perfect history for a vocal cord granuloma," Dr. Saxon exclaimed as if relieved that something was, in fact, clear cut.

Dr. Saxon recommended that Aaron rest his voice and plan to come back after he's been on the drugs for a few weeks. At the next visit, he wants to videotape the scoping. He also insisted that Aaron see a speech and language pathologist to begin learning how to alter his method of speech production to see if that can help alleviate at least the chronic strain his throat. Perhaps Aaron will grow to love this and will continue on with some professional voice training. Aaron always wanted to be a better singer--this may be his chance to begin his preparations for American Idol in 2012. In the meantime, I am living in a house with one male who is under order not to speak and perhaps not entirely unhappy about this: another who speaks all of the time but is not yet understandable; and a third who simply barks out his desires literally.

We had our appointment with Dr. Soiffer immediately following this consult. Aaron related the details as Dr. Soiffer listened. In the end, Aaron has once again stumped our team. "Although GVHD is something to think about, hoarseness generally isn't something we see. In fact, I've never seen it. That said, you are a bit of an anomaly, and I can't say that it isn't possible." And I cannot convey to you how much I hope to never hear this again. No one wants to be an anomaly in these circumstances. Our friend, Jake, has cheerfully reminded me that Aaron has always blazed his own trail and that this experience will prove to be no different. Still hearing those words never seen this before from a renowned transplanter will never bring me any comfort. But just then Dr. Soiffer went on to make his most positive declaration of Aaron's progress to date. "Despite these rather unusual symptoms over the past month, you are doing great in terms of the bigger transplant picture. Your counts are excellent and are doing exactly what we want to see. We'll have the chimera results next week and this is the most significant indicator of transplant success."

These days we are anxiously anticipating what we will learn from the analysis but instead of prematurely discussing the many what if's and brainstorming the equally anxiety provoking contingency treatment options, we are waiting on the results which should be in within a few days and resting our voices.

story of an itch

noreply@blogger.com (seekingmother) — Fri, 27 Aug 2010 17:58:00 +0000

What we have is a story of an itch. This tale develops differently each day with new scenes that are alternately favorable or frustrating; but the basic theme remains unaltered--there is an itch and it persists. And it is a contagious itch that has taken hold of me and seeks to capture anyone who consistently spends time around Aaron.

Even if he does not get out of bed continuously at night to address his itch in the way he once did, I know when he is seized by it because my skin is burning as well and sleep will not come. Before he is up in the morning, I know what state he will be in by my need for an antihistamine or lotion to soothe the hives that now appear regularly on my skin. Fortunately there has been a shift in this consuming itch. After several interventions last week, Aaron is more often uncomfortable rather than strained to his limits and he has had continuous hours nearly every day suffused with sweet relief.

On Wednesday Aaron and I traveled to Boston to have a consult with a colleague from his Harvard days, Dr. Arturo Saavedra. Aaron finds him to be a brilliant clinician and believed that he might be the one to offer more insight than we had so far gleamed about the cause of this itch and any potential treatments that might work better than the options we'd already exhausted. Arturo is a dermatologist at Dana Farber who has a special interest in graft versus host and drug reactions. Within the first few moments of our visit, he explained that in his experience 40% of transplant patients will develop pruritis from their conditioning regimen. The autonomic nervous system is deregulated by the conditioning process and a dysautonomia develops with a specific symptom of itching. While there are a few theories floating around as to why this happens, apparently no one conclusively understands the precise mechanisms. It is not a reaction specific to particular medications as he sees it in patients regardless of the regimen. Though we may never be able to completely root out exactly what happened to bring about this itch, the good news is that from Arturo's clinical experience, most people will feel better by around week 12 post transplant. This improvement occurs because the medications are working well to control the symptoms, the symptoms themselves are lessening, and/or the patients becomes desensitized to the itch.

Arturo showed me evidence of his diagnosis on Aaron's back which was perfuse, red and irritated, but showed no signs of a visible rash. What was present, however, were small vertical lines scattered across his back. These are characteristic of the dysautomia as well as the wider and darker hair follicles. After this exam, he was all the more convinced that he held the correct diagnosis for the itch. After reviewing Aaron's drug protocol, Arturo immediately concluded that none of the medications that Aaron had been prescribed for the itch would help him.

He laid out the new regimen of topical and oral medications that Aaron would immediately begin. Aaron would first use a topical steroid called triamcinolone, then cover his whole body with a hydrated petroleum jelly that will push the steroid further into the skin. This cream, hydrolatum, delivers fat to the skin. It is modeled after lard and feels very greasy to the skin, but Arturo said that after your skin learns how to absorb it that most people become completely enamored of it and never want to use anything else. The look on Aaron's face indicated he was not convinced but he said he would definitely follow Arturo's prescription to the letter. Orally Aaron was prescribed Naltrexone, which is typically used to help get people off of narcotics and alcohol. Though it is not a skin specific medication, it has the greatest reaction with skin receptors. Arturo started Aaron at a low dose because of the risk of seizures. If all is going well, Aaron may be off of this regimen by day 100.

Aaron will also take zyrtec, an H1 blocker, for the next six months along with zantac, an H2 blocker, as they apparently work best together. Arturo stated that this regimen works for about 70% of patients. If it doesn't work for Aaron, there are other options. He also added that patients with low cholesterol seem to be more susceptible to this condition. Aaron has always had amazingly low cholesterol and was advised to consider increasing the amount of fat in his diet to see if that may also add some additional benefit. Though Arturo didn't fundamentally believe that any of the drugs Aaron had been taking over the past month would improve his condition, Aaron will remain on cromalyn, a mast cell stabilizer and doxepin, which he is using as an additional antihistamine.

As I sat listening to him outline this new protocol, I had to wonder why we had not heard of any of these options previously. Aaron has been itchy for over a month and we'd essentially been told by the transplant team that it was extremely unusual and that they had no answers. They'd also assured us that they had consulted dermatologists about Aaron, who was the talk of the transplant team for his rare symptom, and yet when I mentioned this to Arturo, who is on staff at Dana Farber, he said that no one had contacted him for guidance.

A few minutes later we found ourselves with our transplant nurse, Amy, detailing Arturo's plan. She said that we should follow his expertise as they had already pulled everything out of their bag of tricks. I think Dr. Soiffer and the team are incredible and yet this situation baffled me. How easy it would seem to consult your on-staff dermatologist who specializes in skin issues with transplant patients. Who were they consulting over those many weeks? Had Aaron needlessly suffered with this itch all of this time? I was frustrated with myself for not pushing to actually meet with a dermatologist sooner and reminded myself never to let things go on too long again without specialist consults.

We headed home full of hope, even more so because Aaron had another avenue of pursuit to ameliorate the itch. While still in Boston, Aaron began to consider the psychological components of itching and whether or not certain modalities might at least help distract his mind from the itch. He did not ask me for my insight into this, despite my years of psychological and holistic training, but naturally turned instead to PubMed where he could learn if there were any substantiated studies that methods such as hypnotherapy might benefit him. After scanning through several articles on prurits and hypnotherapy which illuminated a clear benefit, he began to look for someone in Boston with the help of our friend, Cheryl. As we ended up leaving just a few days later, Aaron ultimately found someone close to our home in Katonah, NY, and met with him on Friday for his first session.

From the moment I saw him after this experience, he seemed transformed. I could almost hear him sigh with relief when we drove home. It was immediately clear that he once again claimed and inhabited his body. When we returned home, rather than scooting back into the cool comfort of the house, he remained outside with Sasha and shot basketballs. I was anxious that he would get warm from the sun and moving around and that his skin would explode as it had over the past month with just a short walk around the block in darkness, but Aaron jumped about comfortably, smiling and laughing. As his mother and I sat watching him, she whispered to me that we had better get him another appointment in a few days time. When I mentioned this to Aaron, he said that he had one for two weeks from Friday because his doctor was out of town this week. Seeing him so happily himself, I wanted nothing more than to keep him exactly as he was and was delighted when he proclaimed himself committed to this new therapeutic option. He explained that he has home techniques to utilize each day and that he believed they would help on many levels.

The third component of our therapy involved scratching another itch. Since the day after his bone marrow transplant, Aaron began to pester his doctor for permission to resume intimacy. His first plea called upon his desire to celebrate his new birthday and when Dr. Soiffer gave him an ambiguous reply, the burden fell on me to be the responsible party that reminded him of the rules clearly laid out in the 12 inch thick transplant binder. There is a whole chapter on intimacy but I had somehow managed to forget our binder at home and had nothing in front of me to argue with his first night back in the hotel. And so he emailed his doctor, asking and asking again, why he should be denied especially as his counts were not that low.

By our appointment on Monday with Katy, one of the transplant nurses, she indicated that Aaron was the topic of the transplant team all weekend. While the teams was very pleased that Aaron felt well enough to even ask for a doctor's note for the issue, it was not going to happen until he had hit his nadir and his counts were going up. On Wednesday of last week, Aaron once again revisited the subject. To his great surprise and pleasure, he was given the all clear. But how was this possible, I inquired, when he was itchy when I even just held his hand. The hows and whys are up to you but as far as we're concerned, he's in great shape.

After hypnotherapy, Aaron was feeling more passion than itch and he convinced me that unsatisfied desire could be the very cause of this itch. How could I ignore this possibility and potentially inflict more suffering? Put this way, I couldn't despite my concerns for his health.

Our three pronged approach seems to be working. While Aaron felt better nearly every day this week, he still battles his itch and we had a few set-back days when we traveled back and forth to Boston. Still we are hopeful that this itch story will one day be just that--a tale from our past.

going home

noreply@blogger.com (seekingmother) — Fri, 13 Aug 2010 01:13:00 +0000

Last night we lay in bed and neither of us spoke; it was silent except for the itching. The new drug brought on board yesterday along with the sedative effects of heavy antihistamines brought Aaron a fleeting sense of relief.

Aaron slept while his body scratched and writhed beside me and I willed him to stay asleep so that one of us would wake less dazed and full of need. I cannot turn to sleep because there is no sleep for me. Some nights I can bear it no longer. It is then that I pray for someone to discover why he suffers and offer possibilities that will work.

This ordeal is not something I want to linger over and yet this is where we are on our journey. I find myself now in a hurry to get through this phase and find the space once again that feels good. Perhaps that space will be our own home. Aaron's doctor agreed yesterday afternoon to release us from Boston to return to New York. While Aaron embraces this freedom, I am reluctant to leave feeling so exhausted and without answers for his situation. Aaron believes that going home could be a catalyst, but no promises can be made now. Our road feels long to me today as we prepare to depart this place. We should arrive Friday afternoon and look forward to seeing our friends closer to home.

Before we leave, I want to thank the people who were instrumental in smoothing our time in Boston. John Wilmoth, the manager of the Marriott Residence Inn, facilitated the most comfortable and embracing stay imaginable, going above and beyond anything we had expected. Jill cleaned and sterilized the room not once but twice, and Tary has been a full service laundry replenishing our room with sterilized bedding and towels several times a week from her home two hours distance from Boston. Both have also shopped, cooked and cared for Sasha at various times during this past month. We would not have made it without their untiring and considerate assistance. Sarah, of course, performed her exceptional contribution that first week, and also helped her mom care for a sick Sasha. Aaron's mom, Louise, stayed on with us for two weeks to help care for Sasha and help us with whatever chores needed attending. Her time with us was significant. Elana joined us the second week and also pitched in wherever and whenever she was needed with Sasha, shopping, cooking, and offering wonderful encouragement. Our friend,Jake, was incredibly generous and reassuring throughout his week with us. He managed to take care of many things that needed attention and also provided immense emotional calm, support and companionship. All of us found his presence to be a blessing. Lisa joined us last week and stepped right in to tend to two emotionally and physically drained friends and one toddler, who is never slowed by anything. She has been our life-line throughout this process, initiating the flow of assistance from friends and family, and making herself always available to us despite her own very full life. We cannot thank her enough. Her children each received Visa gift cards for their birthday which they chose to donate to Aaron. This family is beyond caring. Rounding out the month is my cousin, Jill, who has once again just effortlessly come forward to give of herself. Our aunt, Frances, has been living at home caring for the dogs and taking care of our NY life so that we could focus on what needed to be done here in Boston. Her husband, Norm, joined her during a particularly challenging week when we lost power and needed many issues addressed in the house. It would have been impossible for us to be here without their assistance. As well, Aaron's aunt, Sue, helped to coordinate care for Sarah's sons, Nathan and Ari in California. Her contribution allowed Sarah to take the week to be here with us.

My friend, Lori, was continually a much needed spirit booster and sustenance deliverer, coming many times with food, smiles and sage advice. Cheryl came forward with essential items for making the room work better for us, stocked us up with food, did laundry, researched alternative healers for Aaron's itching, and always checked in to make sure that we were not in need. Clare, Sue, JP and Kathleen, brought much needed supplies that got us through challenging days. Sarah allowed us the use of a high chair and also sent along a Whole Foods card. Melinda offered us the use of a crib, cleaned it, and her husband, Gareth, delivered it to us and set it up. Several people sent along Whole Foods cards; Leslea and Mary and Christine so that we could cook Aaron lovely, healthy meals. Simon and Kate sent a contribution toward items we might still need and we plan to put that to good use immediately.

Shelly contributed a night at the hotel; Vadjista and Amin paid for several; Jake also thoughtfully contributed toward the cost of the hotel stay. Several others donated points that accrued and also offset the number of nights: Jill, Mike, Megan, DB, Olga, Elizabeth, and Tary's fiance, Tom. A friend of Lisa's whom we have never met, Daniel Ramirez contributed enough points for one night.

Lori and Tary each knit Aaron two lovely organic hats. Crissy sent him yummy organic cotton scrubs. Jill brought him a nice organic lounge wear set. All have been put to good use.

We have so much appreciated the notes and letters of support during this past month and look forward to your continued friendship as we transition home.

Thank you for being present for us during these challenging months.

fondly, Michelle

chimera

noreply@blogger.com (seekingmother) — Wed, 11 Aug 2010 23:38:00 +0000

In Greek mythology Homer described a fire spitting monster with the head of a lion, the body of a goat and the tail of a serpent.   He named this creature a chimera.

While these past weeks of intense skin itching and burning have significantly impacted Aaron’s physical and mental state, and each day and night he has wished that he could shed his skin like a serpent and start anew in virgin skin, he has not been so transformed.  Still the very process of a bone marrow transplant turns an individual into a chimera as the DNA in their blood is different from the DNA in the rest of their cells because it is, in whole or in part, from the donor.

We are now in the time of the chimera of Aaron and Sarah.  Aaron hasn’t yet had a chimerism analysis to survey the engraftment process precisely and determine how much of his newly developed hematopoietic system is from Sarah or himself—our first will be next week—but we can officially declare that Sarah’s cells have engrafted.

We saw the first indications of engraftment a week ago at day 11 with a slight increase in the white blood cells and hematocrit.  At the time Aaron’s doctor was hesitant to say for certain that he was engrafting because he was still within the nadir and the counts can bounce around a bit.   The white blood cells are generally the first to normalize followed by platelets and red blood cells.   His doctor indicated that it was too early for Aaron to be out of the woods for transfusions and that he would still likely need red blood cells by the end of the week.  Aaron was kept on neupogen injections as it was suspected that these counts would also drop without support.

Bone pain and flu like symptoms were anticipated with the engraftment process as the cells begin to replicate so quickly in the marrow space that it becomes crowded and can cause some discomfort before they are mature enough to circulate in the blood.   Apparently the pain can happen anywhere with discomfort in the low back, sternum, hips, and femur most common.  At this point, Sarah’s cells were not replicating enough to maintain a full complement in the blood, but there was evidence of them setting up shop in Aaron’s marrow and getting to work.   This new immune system is more similar to an infant’s and not at all mature.  With this immature system and the further immunosuppressive medication that keep the breaks on Sarah’s cells, Aaron will have to be very careful for many months.  But as the week wore on, we were hopeful that the counts would continue to strengthen day by day.

By Tuesday, Aaron’s hair began to fall out in large clumps which exacerbated his itching and so on Wednesday, I shaved his head.  With the bald head and mask and gloves, he actually began to look like someone who had gone through a major medical situation.   Around the hotel, people moved to the side when they saw him coming.   A small child pointed to Aaron’s mask and shrugged his shoulders as if asking what’s wrong.  We were told by the hotel to take down our usual signs that we placed on the washer and dryers requesting that the clothes not be removed from the machines as they were for an immuno-compromised cancer patient because other guests were frightened for their own safety. But within the confines of the hospital setting, Aaron is amongst his peeps and everyone smiles and nods with acknowledgement that they are each dealing with their own battles.

With each day that passed Aaron’s numbers continued to improve and he never experienced any adverse engraftment symptoms but his itching hit new levels of torture.  Despite Aaron being a huge topic among the transplant teams for his mystery itching, no one had any answers as to what was causing the itching nor how to best control it.   Many drugs were thrown on board to attempt to manage the symptoms but no amount or combination seemed to do the trick.  Aaron grew increasingly frustrated and began to take more drugs and test out his own theories but we found ourselves still up every night with him ready to jump off the roof by 4 am.

By Friday, engraftment was officially confirmed; his counts looked amazing and he had made it through these early weeks without any blood products.  I was nervous that Aaron’s counts had never completely bottomed out and that this might be a negative indicator of how well we had softened his own immune system prior to transplant.  Dr. Soiffer’s nurse, Amy, told us that she was completely comfortable with the level of the dip in Aaron’s counts and that it absolutely proved that he was going through the process and that he was doing amazingly well.   She said it was very rare to make it through this process without transfusions and she was more than encouraged by the beautiful blood work.

Amy then asked how he was doing aside from the itching and he explained that there is no longer anything outside of the itching.  The itching had become all-consuming for everyone with days and nights revolving around trying to manage the extreme discomfort.  Because his Hickman line was still tender and red, and his good overall performance with count recovery, Aaron convinced his team that he was no longer willing to just try to manage the symptoms.  He wanted to find the cause and his first line of inquiry was the Hickman.  They wanted to maintain the line for a longer time because his engraftment was not yet robust and the possibility for readmission into the hospital for infection was still a possibility.   As we further discussed the amount of medication Aaron was taking to control his itching, Amy warned him that they lose several transplant patients a year to bad choices.  Aaron persuaded them that he would be on better behavior if they were willing to take it out immediately so that we could at least eliminate it as a culprit.

The removal went smoothly and we returned to the hotel full of hope that the next 24 hours would show some improvement in the itching.  It didn’t.  In fact, the itching progressively became worse.  The night itching continued to be the most difficult to endure and then Sasha stopped sleeping through the night again.  By Sunday, it was clear that he was sick with low grade fevers and congestion.   After another long night, I was sick by Monday morning.  Monday night was the most challenging night of itching.  We had an emergency appointment yesterday to once again review the list of possible causes and potential remedies.  They administered steroids to try to stop the itching for the night until Aaron could see his own doctor but we spent another sleepless night experimenting with more of Aaron’s own itch management theories.

At this point, Aaron continues to be an enigma to all of the transplant team and dermatologists at Dana Farber with his mystery itching and we are both desperate for answers and solutions.  When he is not in a drugged out stupor, he spends most of his time researching possibilities to end this symptom once and for all.

Many days I have sat down to write of this time since my last update and wasn’t sure what to say.  It seems to us that so much is happening and yet nothing is.  Days have passed and Aaron’s situation has not changed except to become more unbearable.  It is difficult for any of us to relax.  We are exhausted and momentarily blinded by this unexpected outcome.   It is so frustrating to know that if we could only discover something to alleviate this problem that Aaron might be feeling really good considering he has just had a stem cell transplant.  Aaron is not a man used to restrictions and his life now is completely different.  He cannot leave the hotel room because changes in temperature seem to aggravate his skin.  He cannot easily concentrate because he is so preoccupied with itching. My mind is adrift with how to soften the edges of these vulnerable days and also with the next fearful thing.

With engraftment, we must be on the lookout for graft versus host disease.  The confounding issue is that it often begins in the skin and with Aaron’s skin already stressed, I worry that this too could reach alarming levels.  In the shadows of the night, I lay back and listen during the moments that Aaron manages to sleep and pray that I will find a way to console him.  Until then I follow him as he paces, keep an eye on him as his bathes so that he doesn’t fall asleep then in the lumpy oatmeal soak, and soothe him in any way that I can.  I have a mental picture of him reemerging one morning against all odds with new skin like a serpent and to this I will exclaim hallelujah.

nadir

noreply@blogger.com (seekingmother) — Sat, 31 Jul 2010 16:54:00 +0000

Aaron’s doctor reminded us that a transplant is a process, not an event, and that we are still in the early stages.   Today is day eight post transplant.  No longer are we counting down to the transplant, we are building forward from scratch with one day upon us and then another until one week has passed and a second approaches.

Time compresses and expands and only in unguarded moments do I surrender to the gnawing ache of uncertainty that causes my whole body to shudder.  When I asked Dr. Soiffer if Aaron was progressing as well in his eyes as he looks to mine, instead of the amazingly well that I’d hoped for, I received so far.  There is no day in our sight with the precious relief we both crave, only a realization and acceptance that the road is not straight and that we must relinquish the need to know precisely what lay ahead because we have no claim to this understanding.  I can try to steer us and remain wrapped up and ready for the job, but I am not fooled; no promises are within my grasp today or any day within the immediate future.

For the transplant patient, the first 100 days is often regarded as a monumental marker.  When I first learned of this, I thought of the first hundred days of a presidency and how tempting it is to evaluate what has been accomplished and what it means for the future, or of the first hundred pages of a novel which is something I often use as a construct with my clients to determine the depth and viability of a project.  The number 100 holds a certain appeal—if we can just reach this number than all will be well-- but Dr. Soiffer explained that there is no magic in day 100.  He finds that target to be an arbitrary point in time, and that there is nothing more special about it than 99 or 101. The transplant is dynamic, evolving, unpredictable, and something that embroiders my days with a whimpering, constant concern and strains my nights with sizzling fears and dangers.

Aaron was discharged from the hospital one week ago.  After eight days on the transplant unit, he is happy for his freedom and determined not to find himself contained again.  We are told that the parameters of this time outside are narrow.  If he has a fever of even 100.5 he must surrender again without delay.  So far he has been fever free, his energy level is better than it should be, his appetite is present and nearly normal all considering.  His main complaint is a consuming itchiness that has set his skin on fire.  This agitation occupies his attention all hours of the day and night.  He cannot concentrate or sleep or enjoy his time outside as the heat seems to heighten the burden to insane levels.

The transplant team is a bit perplexed as this is not a common symptom.  We have swapped out one medication to see if it is the offender but so far relief has not been found. New drugs were added to control the discomfort but again nothing has touched this itch.  The idea that Aaron may be allergic to his Hickman line was given consideration yesterday. He certainly has a mental disdain for it so perhaps this has translated into a physical intolerance.  In any event, the line may come out sooner than anticipated which will still not be soon enough for Aaron.  The Hickman has been red and tender and at times weepy but after some attention this week, it was not, in the end, infected.   Aaron believes that if he were without the Hickman and the itching, he would feel nearly normal.  We know that his physical state will soon change but don’t know to what degree.

We are now approaching what is called the nadir period.  A nadir is the lowest point of anything.   For Aaron his nadir will be the point when his blood cell counts are at their lowest points after treatment.  There are many implications of the nadir.  We want to see a nadir because it confirms that the conditioning regimen has done its job in softening up Aaron’s bone marrow so that it is amenable to Sarah’s stem cells.  It is easier for Sarah’s stem cells to populate the bone marrow if there is less of Aaron in it. Her cells are in his body and they are probably just now starting to divide and transform into the different progenitor cells of the bone marrow.  From there, those cells will divide into the more mature cells that will circulate in the peripheral blood.  But until they do, we are in a vulnerable period because Aaron’s innate cells are decreasing and Sarah’s cells are there but not yet producing what Aaron needs to live.  This is the time when Aaron will be most vulnerable to infection, bleeding and fatigue.  So far he has just needed infusions of magnesium but it is likely that he will require some transfusions of blood products to make it through this time.  Each blood cell type reaches nadir at different times so we will have to watch and wait day to day.

This is a challenging period for Aaron physically and for us both emotionally.  We know that he must trend downward and hit this nadir so that he can rise once again and yet as we inch downward it is nearly impossible to witness this fall with welcome arms.  And yet we must remind ourselves that there is no other choice and we must invite the change because change is what we now seek and need if Aaron is to survive.  After many months of my spirits dropping, I hit my emotional nadir last week with Aaron in the hospital and Sasha also experiencing uncomfortable demands on his body.  I had feared this monstrous fall and resisted the plunge for so long that I hadn’t realized how far I had already slipped.  To finally surrender to it brought me a peace I had not known possible.  All these months I have been fighting for my life as well, believing that a loss of control equaled death.  Now I understand that falling is just falling and that when I allowed myself to release the shackles that imprisoned me in my particular dungeon that I found a way through the bottom to another place entirely.

Our life is a time of waiting and shifting.  Assurances may come and they may not.  Worries over graft versus host disease and graft failure pop into my mind daily. Will the complications be minor or life threatening? Will they happen soon or develop over many months?  I’d like to tell myself that they won’t happen at all but we are told daily that one of hundreds of scenarios are possible and that we cannot expect to coast through unscathed. Though it is complicated and difficult to settle into this existence, we must.

In novels, there is a moment called the darkest moment.  This is the point where everything seems lost.  You need this moment before you can find the answers and the ultimate resolution to the challenges that the characters have faced.  Unlike the structure of a plotted novel, our nadir will likely not be our only darkest moment.  It is simply the one we are currently facing.

Still, it is a meaningful and significant time and one we cannot let pass without gratitude. Instead of merely watching falling counts and noting new symptoms, this time can be something powerful and life altering in the same way that the new cells are dividing and maturing in Aaron’s body.  We have the opportunity individually and collectively to design the shape of our days and what we will derive for them.  Even in these uneasy days, we can move beyond surviving to thriving with the divine blessing of life taking root and flowing through us, a necessary passionate flow that will ultimately bring us what we desire.

I am eager to document our experience since our arrival, especially the hour of the transplant itself, but find the living of it to be consuming most days.  I will eventually put together some rendering of our journey when I can steal another hour and will share it so that those of you who are interested in the details will have more understanding.  Until then, know that Aaron is doing better than we’d expected so far.

arrival

noreply@blogger.com (seekingmother) — Thu, 22 Jul 2010 21:45:00 +0000

A long time ago it seems we were in our home and now we are not. Now we are in a maze of days and thoughts and memories and I am trying to find a way to communicate what has transpired over this past week. I must share these events that seem to have happened months ago and yet I still feel their effects thick on my skin.

The images stalk me--Aaron's disorientation after his Hickman procedure which led to an unexpected and chaotic hospital admission, Sasha's burning skin and listlessness, my exhaustion from running between my sick child laying on my chest and Aaron hospitalized across the river. There have been days of chemo and appointments and tending to the many details that must be in place before Aaron can be discharged. Nights awake with Sasha when I consider the unanticipated turn of events and also try to distract myself with new stories about our life.

Aaron physically held up very well with the conditioning regimen and the immunosuppressants until yesterday when the fatigue and nausea caught up with him. But he is a holding steady and for this we are grateful. Earlier in the week I thought I had reached a breaking point. With nothing to eat or drink, no sleep, and a desire to take care of both of my boys, I hit the floor of the ER where we'd brought Sasha for care and wound up in a hospital bed myself. Some situations have tested the very stuff of me while others have returned me to a woman full with desire and belief and for both I am grateful.

Today there is too much in me and not enough in me. I can't believe that this day, the day of Aaron's actual transplant, is the first one in which I have managed to sit down and write. We are waiting now for the stem cells which will soon be delivered. They are being walked over to Aaron's room as I write.

I hope that Sarah will write about her experience with donation in the next days and that Aaron will post entries as well when he is feeling up to it. I am not sure if I will document the details of these past days as one long entry or if I will unfold the story day by day beginning with our arrival in Boston, but the specifics will be shared as soon as I can focus long enough to capture these moments in our life.

anniversary present

noreply@blogger.com (seekingmother) — Tue, 13 Jul 2010 03:16:00 +0000

Pray for us on this anniversary of our union and in the days to come. Aaron is without fevers and if he remains so, the transplant will take place as scheduled. Our wishes have been granted, and though it is still a challenge to declare this experience a blessing, my deepest self knows it to be true. With so much stirred by this news, we must find a way to surrender to much needed sleep so that tomorrow we can pack for our journey.

finding light

noreply@blogger.com (seekingmother) — Sun, 11 Jul 2010 22:52:00 +0000

For someone whose favorite word these past weeks has been anticlimactic (That last round of chemo was completely anticlimactic; I fear that your very belated birthday present will be anticlimactic; I can't wait to say this transplant was so anticlimactic, I'd do the whole thing again), Aaron was a bit of a dramatist this week.

I'd planned to write a post about our trip to Dana Farber on Wednesday, something simple and basic that described what we'd learned, but instead, after a midnight arrival home and the transplant date suddenly in jeopardy, I was too overwhelmed to write anything at all.

I thought I'd add a little last minute twist to the story, he said as I lugged him and Sasha out of the car and into bed. The whole writing about our day and the number of times we heard all of the risks associated with this little procedure of ours just didn't sound all that interesting. I muttered thanks a lot, Aaron and looked forward to the moment when I could be released from the flurry of anxiety that had kept me awake after an exhausting day and a drive home fraught with a screaming baby, an unsteady feverish Aaron, and getting so lost after being stuck in an hour's worth of traffic that I added another hour onto our trip.

The day had started off on a much better trajectory. We made it to Boston with a happy Sasha and just enough time to grab a bite to eat. My cousin, Jill, arrived promptly to whisk Sasha off for an afternoon adventure at the aquarium, and we waited less than half an hour for our first doctor's appointment with Aaron's transplant physician, Dr. Soiffer. He praised the results of the chemo and then quickly discouraged us from any thoughts of just riding out this remission for as long as possible. His warnings were completely unnecessary. In unison the two of us declared that we were ready, willing and able for this transplant to occur. That is until he once again ran through the very long list of risks of the procedure at such a breakneck speed that I could hardly attend to one before I was bombarded with five more. You can have infections even when counts recover because of an immature immune system. You can have organ dysfunction. Transplants can result in short or long term disabilities that are fatal. The whole gamut of risks associated with Graft Versus Host Disease are lengthy. But you know this already, he'd declare whenever I paused on one of the catastrophic consequences of graft versus host disease. Had I heard of that issue or that one or that one? And did it even matter anymore? Despite the shorthand in which he spoke with Aaron (something I have grown used to over the years when doctors speak to a fellow doctor), I furiously scribbled along in my notebook, hoping to put some structure on this unwieldy discussion. I'm not trying to be a downer, Dr. Soiffer declared ultimately. I'm just giving you the lay of the land.

A quick examination of Aaron revealed the enormous gash on his leg from last weekend's warrior gardening. Let's just say that Dr. Soiffer was not too excited about one of his patients having an open wound a week before transplant. Stay inside for the next week, will you? No more of that. Ever hear of long pants, Aaron? Good question. And then we moved onto the cough that has been around ever since Aaron began the high dose steroid regimen in March. Are you sure you're okay? I'm hearing a bit of congestion and what's that cough? Aaron rehashed the pattern of this cough and though Dr. Soiffer did not seem to be pleased about it either, he dropped the topic in order to obtain Aaron's signature on hundreds of consent forms--most of which Dr. Soiffer advised Aaron not to bother reading. As Dr. Soiffer quickly outlined each packet, I'd occasionally chime in with questions. How well are the patients doing who received the vaccine? What is illegal blood? and so forth. Before I knew it and before I really felt satisfied with my opportunity for discussion, we were sent off for blood work and the rest of our sessions with a plan to reconvene at the end of the day.

When Aaron was brought back for blood work, he was gone for a long time. Usually blood draws take anywhere from a minute for a finger stick to about five or ten minutes. When Aaron had not returned after a half an hour, I could not imagine what would keep him for so long. I'd seen him go into the laboratory, I told the nurse who came looking for him for the TB test. Another nurse was in search of us for the transplant educational session. And with this delay we were definitely going to be late for our appointment with the transplant social worker. Aaron eventually returned looking pale and exhausted. They took 28 vials, he explained as he swayed before me. But we had no time to waste. Our schedule was derailed. With juice, water and an empty urine container in hand we rushed to another clinic for our next appointment.

I finished a notebook as I listened to the nurse, Patricia Byrne, describe the transplant process and aftermath in great detail. This is the stuff with which I'd planned to fill this post but as I've been reminded by the events of the past few days--there is no absolute trajectory. Though she also reiterated the common mantra of the rotten year and the many problems we may encounter with this reduced intensity conditioning stem cell transplant--take my word there is nothing mini about it-- she was a wonderful educator and advocate and made me believe that there was no better place in the world for us to be doing this procedure. We will never put you in harm's way, she promised. We don't want any surprises for you. You will partner with us in this.

It was during this session that Aaron began to feel very cold. He attributed it to all of the cold liquid he was drinking to replenish himself after the blood draw and have enough in the tank to fill that urine sample. He was wearing shorts and a tee shirt in an overly air conditioned environment and so I have to admit that at the time, I thought nothing of it. Aaron had gotten up early that morning, exercised, drove to Boston--everything about him seemed perfectly normal and healthy except of course that he was about to have a bone marrow transplant. So I handed him his sweatshirt, and went back to my intense focus on what the nurse had to say.

At some point in this discussion I realized we were late for the next session but Patricia assured us that this was the typical domino effect when one appointment was off schedule and not to worry. I had so many questions and Patricia held so many answers that I was not eager for our time to come to an end. But sure enough within a few minutes, the social worker called looking for us and in the end came to the room where we were having our appointment to perform our clinical assessment. You can't take it all in today, Patricia reassured me. You're going to be learning this over and over again, step by step. You don't have to know it all now.

I'd had the opportunity to speak with the social worker, Tammy Weitzman, a few weeks ago and was immensely comforted by her support. We spoke for hours about what I have experienced over this past year and also covered my long-standing issues with loss in my own family. In this session, Aaron had the opportunity to discuss his concerns for the transplant and as is typical, he had very little to say. He believes that he will do very well through the process and though he understands the risks fully, he is ready for the procedure and to be done with cancer once and for all. He naturally hopes to coast through the transplant but understands the road can be rocky. He just wants it to not be so rocky for him. He feels confident in his doctors and is excited to be included in the clinical vaccine trial which he believes will add extra benefit to the procedure. All in all, he is solid and ready. On the other hand, I was of course trying to wrap my brain around the schedule of events and wondering how it would all come together.

The more I learn about the transplant process, the more I realize just how HUGE it is. The time in the hospital is the least of it, she explained. That's likely going to be when you feel at your best. It's the weeks and months that follow where the mechanisms of what we're doing to your body and the short and long term implications become apparent. The general public has no clue what a transplant is all about. They've heard about or seen the effects of cancer and chemotherapy but that's chemo 101. You're going to need support for a while and the more we can preserve you and support you, the better. This is a HUGE deal and as you become engaged in the process and step into that transplant unit, it will become clear. For now, I want you both to stay focused on the path forward--getting ready to get here and then keep your eyes forward. The nurses know how to take care of Aaron, she said, how are we going to make sure you're not going to run out of steam, Michelle?

This is the very question I have been working on and I believe it centers on my ability to have faith in our life and be in our life without constantly agonizing over the events we are facing. I have to find a way to live in the presence of all that is happening and know that each moment is significant and that I am meant to learn and grow and enjoy because there is blessing in this life just as it is. This is the place where Aaron resides and for me to support him, I have to not only discover the route to this site, but make it my home. I know this and am working on this and yet there are still times when I cannot get a handle on the sheer panic I feel whenever I see Aaron suffering or when I allow myself to wade into the knowledge that the outcome is ultimately not under my control. Tammy reminded me that I am entering an environment with a lot of support and that I will feel an automatic bond with the nurses, who will hold me up, while Aaron is in the hospital. Who will be there for you when you leave? she wondered. Ultimately the resources I must find are within myself.

Tammy walked us back toward Dr. Soiffer's clinic for what we believed would be a quick wrap-up. Aaron and I made our way through the corridors and he suggested that I give Jill a call and tell her to make her way back into the hospital. As we entered the clinic, I turned to find Aaron shaking so intensely that he could hardly walk. He explained that he'd started to have the chills during our appointment with Tammy and that he needed to warm up. He collapsed into a chair while I raced to make him a cup of tea. But he could not hold the tea because he was in full rigors and as the minutes wore on, he seemed to become more disoriented, though he later told me that he was just trying to think back through the day and whether or not he had been experiencing any other symptoms. The nurse immediately brought him in to check his vitals and Dr. Soiffer was paged. When the nurse declared a temperature of 103, I hit that panic state immediately. I tasted bile and thought I might vomit. I felt so dizzy watching him shake that I had to avoid looking at him. And then Jill appeared with a just napped and eager to run baby.

Aaron immediately suspected a reaction to the chemotherapy but Dr. Soiffer wasn't convinced. I stood and watched and fretted and wondered aloud a hundred times how and why this was happening while Aaron sat wild eyed, shaking in the chair. Aaron was annoyed that no matter what the cause, that this fever was going to be a hassle. He said he didn't believe it was an infection and yet he knew that because he spiked a fever that it would have to be worked up as one. In the back of his mind, he said he entertained the idea that maybe it was an infection and understood that they had to know for sure given his current state. With a 103 fever and intense rigors, Dr. Soiffer sent him without delay for a chest X-ray and to have blood cultures drawn. This was not the condition that Aaron should be in a week before transplant.

In the end, the chest X-ray was negative and the results of the blood would not be back for a day or two. Dr. Soiffer deliberated on what the best course of action would be. I could not imagine that Aaron might be hospitalized a week before his transplant with a suspected infection. All of the little details clogged my thoughts. Where would we stay? I had no supplies for the baby. What about the dogs? And then the larger ones shut down my ability to focus on the moment at hand. What were the implications of an infection given Aaron had not responded well to the neulasta injection on the 2nd and his neutrophil count was low? Were we canceling the transplant? If we canceled the transplant, how would I rearrange everyone's schedule? So many people to coordinate--Frances arriving on Tuesday to take residence in our house and care for the dogs; Louise on Thursday; and Sarah on Saturday--all from California. How would this work? And yet we didn't want to rush into a transplant with an infection brewing, if this is indeed what is happening. The whole thing was surreal because I'm not really so eager for this transplant, and yet there is now so much momentum going forward that to imagine a delay seemed almost tragic. After several hours of evaluation, Dr. Soiffer agreed to release Aaron on the condition that he stay home in bed. Our plan was to see how Aaron did clinically over these next days and wait on the blood cultures.

These past days were not what we had planned. Aaron was meant to be at work this week, finishing up cases, organizing his office, concluding business. Instead he was at home, sweating out fevers in bed, at the local oncologist for further evaluation and blood work. Instead of completing more tasks around the house, I kept him under constant scrutiny and emailed back and forth with Dr. Soiffer on his condition. I am making him soak his wound in Epson salt so that I might put an end to my dreams of gangrenous legs being amputated or strange infections that Aaron has mistakenly mentioned to me in the past that can occur with a low neutrophil count. Though Aaron was a bit tired, he was in no way defeated. This does not seem to be part of his repertoire. Fortunately he has not spiked a fever since Thursday and all of the cultures continue to be negative. Still I continue to repeat that I did not see this coming. I hope not to say this too often in the months to come.

This journey is enormous and we have much more to go. Clearly this is a rugged journey not for the faint of heart and despite my best intentions to avoid my terrible fear, I am once again drowning in its overtones. I need to muster some courage, some way to endure these sudden dangerous turns as we were told numerous times that they will come and that even if all is going well, we can take nothing for granted. Throughout our day at Dana Farber we were told that this would be a rotten year but one that would hopefully yield 50 beautiful ones. We learned of so many freedoms lost, of living under intense uncertainty, and I knew then before Aaron had collapsed that I needed more strength not to dissolve under the weight of this. Once he was immobilized by fever, it became that much more urgent and clear that no matter what was happening that I had to last intact at least through that night so that I could get to the next day and the one after.

We are hoping this episode was just a little pothole and not a true detour, but no matter what it amounts to, we are still on the road. There will be more of this before we reach our destination and we're told the upcoming detours could be extreme. Prepare, prepare, prepare my mind and heart so that I can be a worthy companion for this incredible man, I have reminded myself a thousand times.

Looking back over these past days, what have I learned? Am I stronger from this? What is the truth? Am I wiser? Am I more ready? I have to wonder if maybe this event was to check my preparedness and my resolve. If I am honest, I must say once again that I am not pleased with myself. My determination to struggle less, accept more, learn from each moment was nowhere in sight when Aaron was in this diminished physical state. How long is it going to take for my faith to meet less resistance? How long will it take for me to trust that this is the road we're meant to take and that I am the one to pave it and maintain it with Aaron and that it can be a heavy chore or the ultimate gateway to an illuminating and rewarding life depending on how I choose to see it? I don't have an answer yet on this one but I am moving along.

Perhaps there is no sense struggling with this. This is the very thing I said I would release. But when I see Aaron's face pale and drawn, what can I say--my heart and mind act the part of a wife overcome with worry and it is difficult to take comfort in the fact that this is going to be our reality for months to come and that ultimately these kinds of minor setbacks will not necessarily dictate our larger goal. This stage of our metamorphosis may be at best unflattering of me and at worst terrifying, but I have no desire to stop it. I'm ready to hike to the most inaccessible reaches of this road and if I am stuck on a rock for a while and don't know how to make the path traversable for Aaron, I know I will ultimately find it. Even if I stumble or shuffle for a stretch, I will eventually keep pace with this marathon and this strong determined man.

Last weekend my cousin, Jill, and I went to the fourth of July fireworks in the town park. We decided to walk back to the town center rather than take the shuttle bus. Soon after we departed we found ourselves in complete darkness. My town has no street lights and the walking path zigzags along the road and into stretches of woods. As darkness closed around us, we questioned our decision to take this path rather than stay with the masses boarding the buses. We didn't know what to do. I felt helpless and my first instinct was to stand perfectly still and ground myself but how long would this strategy work? Suddenly a flash of light skimmed across the pool of shadows up ahead of us. In those moments that small light felt lifesaving and intense and without hesitation we moved toward this light whose source was a lone woman with a flashlight. She told us she had made the same mistake last year and was determined to come prepared with a means to guide her way home.

Even in the light, our path was mainly obscured. I could not see every step ahead of time. I only knew that there was a step and then another one. Moving this way through the darkness, my instincts began to strengthen. I tuned in more to what was inside me and allowed myself to focus on and be grateful for the light there was, instead of being so preoccupied with the shadows that I lost the pleasure of the mystery of these moments. Ultimately she turned off the road before we did, but by this time, I could clearly visualize where I was going and was at peace with it. I wasn't concerned with how long it took me to reach it or if I took any wrong steps. I surrendered to the journey and in doing so, the light inside me took shape.

After our long day in Boston, with Aaron and Sasha finally both asleep, I feel dizzily on the bed and took my first real breath in the many hours since we left the hospital. That night, I dreamed of that light. It flickered above Aaron's head and then his heart and then the length of his body and soon covered mine as well. Before I knew it, the light burned so intensely that I could see it with my eyes shut and there were no shadows left in our room or in our house or in any of the landscape around us. The light had covered us inside and out.

One of Aaron's most pressing concerns about hospitalization was in not seeing Sasha for so many days. He was thrilled to learn that they will allow me to bring Sasha to his room for daily visits. Sasha is this light for us, directing us at all times. While Aaron and I tended to his complications on Wednesday, Jill tried to entertain Sasha. He found his way to the hospital chapel where a woman was praying. Sasha was mesmerized by the quiet room and Jill whispered to him and though he whispered back, Jill worried that they were disrupting the woman from her thoughts. She decided to take him out of the chapel but Sasha did not want to leave and stood outside the door talking. When the woman emerged from the chapel, she looked down to find Sasha staring up at her. She asked how old he was and smiled. I heard this small voice and thought it seemed right to hear it. He brought me comfort. I like to believe that he brought her the same hope he give us each day.

Our story like our selves is subject to revision. I'd planned to tell you about our further introduction to this world of the transplant. Such a land unto itself, unlike anything else, and we are still standing merely in the wings, waiting to be brought in. But I cannot plot this story; I can only live it. The further we travel, the more I will understand. There are no short-cuts.

en route to the main event

noreply@blogger.com (seekingmother) — Wed, 07 Jul 2010 01:39:00 +0000

After two whirlwind weeks, I am both exhausted and astonished by where we are today. Between chemotherapy and doctor's appointment s, and tests, and still more tests, we managed to escape to Martha's Vineyard.
It was perhaps the best trip of my life watching Sasha begin to take in the magic of the vineyard; and walking our familiar beaches and streets rejuvenated us all in ways I had and hadn't anticipated. The universe gifted us such perfect days that we almost forgot about our day to day struggles and allowed ourselves to believe this whole cancer scare to be simply a bad dream. It was exactly what we needed going into the upcoming days.

When people familiar to me on island asked me why I wasn't staying for our usual time, I shared that my husband was about to have a bone marrow transplant. Their usual first response was to ask if he was in the hospital or at home in bed. As I pointed him out juggling Sasha and the two dogs, their faces revealed more than disbelief. That man is sick. You're kidding. He looks perfectly healthy. And it's absolutely true. Aaron' s energy is electric and vital, and this often fools people into seeing what they want to see, including me, until I am in bed at night and my world alters and I brace against my fears. But on this trip, I had few terrible dreams or heart palpitation s. All day and night, I stared at an Aaron radiant with life and health and told myself the story I want to hear--the one of our transformat ion.

Yes, this is a metamorphos is story and as it happens in this chapter, we have both good news and bad news. Fortunatel y as things turned out, the good news is all ours. The insurance company will be disappointe d to learn that after scrutinizin g every inch of Aaron's body, an inexhaustib le canvassing in hopes of finding a reason why he should not be transplante d, Aaron is very healthy except for the leukemia. And on this front, we have good news as well. Aaron's lymph nodes have shrunk considerabl y with all of them within or very close to normal range. His bone marrow biopsy, which was taken on June 15th, showed only half of one percent CLL cells. So 99.5% of his marrow was cancer free as of the 15th and he has had several rounds of chemotherap y since, so it is possible that there is no residual disease at this point. I am certain Blue Cross will be disappointe d that they cannot deny him.

But this is not a chapter without complicatio ns. While Aaron underwent his own weeks of treatment, testing and appointment s, his sister Sarah, also embarked on the beginning of her path. She flew out to Boston to undergo extensive testing as part of the donor process. During her physical, the nurse noticed that her thyroid was enlarged and wanted to perform an ultrasound. Sarah was not able to stay in Boston for the procedure and instead returned home to complete the evaluation. She acted quickly and yet the news was still drawn out. After over a week of waiting, our knowledge is still uncertain. Sarah has a small nodule on her thyroid and so far it is unclear why. Her blood work is essentially normal and she will need a biopsy for the final word. (I must add in here that this is the very reason why Aaron wanted to become a pathologist --to have the final word.)

When we first learned the news of the enlarged thyroid, Sarah was alone in Boston and Aaron was receiving chemo in Connecticut. I was haunted by the thought of her being all alone and given news on something so unexpected and at the idea of her also having a malignancy. We have since learned that Sarah is also very healthy aside from her nodule. The test for CLL has come back negative which was a blessing as there are studies which show siblings having a higher incidence of CLL. After much considerati on, the donor team and transplant team all believe that Sarah should remain the donor and do not plan to evaluate Elana. Sarah will monitor the nodule and will likely have a biopsy after the transplant. So despite the unforeseen complicatio ns, it is final. Sarah is the donor.

This transplant has come to life and the realization hits me moment by moment in waves. Besides the thousands of things still awaiting my attention, my main priority in these last days is to fulfill this notion of transformat ion. I do not plan to walk through this experience without my mind and my soul opened to their fullest capacity. I want to make something positive of this significant experience, be enlightened , expand my vision for what is possible. Each morning I ask myself: How will I walk this road? Will I be able to see this life of ours, this life busting open, as an adventure and not a mine field? I believe that I will and I believe this to be true because I am following in Aaron's footsteps. Aaron is a master of walking straight into the unknown without fear as if it is a trip to see one of the wonders of the world. Aaron is affirming and inspiring and because he is ready, I am as well. I will proudly accompany him on this transplant journey and despite my occasional panicky outbursts, he always makes me feel welcome.

At this point, there is little time left for preparation , either practical or emotional; we are mere days away from moving to Boston to begin our new life. No more rehearsal weeks for us, the time is upon us. Unfortunate ly we are not as organized as I'd like to be, but this too improves a bit each day. I know that I will ultimately come up short in several areas and am grateful for those of you who have offered to help fill in the gaps. A friend recently suggested that description s of our needs would be more effective coming directly from myself. I must admit that it is all together difficult to advocate for myself in the way that Lisa has done over these past months. It is hard to even list the issues that need attending and so I would greatly encourage anyone that wants to offer any kind of assistance to us through this process to be in touch with her directly. Lisa has a list of items and actions that would be helpful and appreciated. I know that she is also organizing a Marriott Points Drive to defer the cost of the hotel. She has information on the best way to donate points. This is her email: ldbl azer@san.rr. com That being said, you can also feel free to call me or email me and ask me directly. I just find it hard to list my needs in this way.

On this note, I can't end without a few more thank you's as I do want people to know how much their efforts mean to us. Thank you to aunt Sue for watching Sarah's sons Nathan and Ari so that Sarah could come out for her tests and for caring for them when she is in Boston for the transplant. Thank you to Jake for the laptop computer that Aaron is already putting to good use; and to Anu and Lisa who have equipped him with a wonderful bed lounge pillow and bed tray which Aaron has renamed an activity table. Thanks to Polly and her family and her parents as well who have contributed toward another air purifier along with Caty. To Aaron's company for sending a car to bring Sarah to and from the airport. To Lisa for her tireless efforts to keep this show rolling and to Jill's inexhaustib le energy in getting this house of ours in order and keeping us both well fed. And lastly to Louise for having four kids and to Sarah and Elana for being perfect 12/12 matches. This wouldn't be possible without you.

Aaron has completed chemo and there is only one last test that he will undergo tomorrow when we spend the day at Dana Farber getting acquainted with our transplant team. It is a test for TB and none of us expects a problem. So essentially we have concluded one phase of this adventure and we are getting on with the main event. Fortunatel y Aaron is off to the best start possible on this journey and all indications both actual and those inside me tell me that the future is stretched wide before us.

As individuals and as a family, we are under development ; read on to see our incarnation s over the next months.

Father's Day

noreply@blogger.com (seekingmother) — Mon, 21 Jun 2010 03:41:00 +0000

Dear Aaron,

Today on Father's Day, I asked you What do you love most about being a father? and you replied Everything. Every moment. I want you to know that Sasha feels this every day of his life.

His life right now is perfectly normal because you have made it so. He suspects nothing of what you are going through. Not the fatigue or the discomfort or the concerns of what is now just right around the corner. You are an extraordinary father. Because you are amazing at everything you do, I expected a great deal of you as a father. But you are so much more than I ever imagined. You are so present and essential. Watching you with Sasha--your patience, loving devotion, curiosity, your perfect balance of entertainment and instruction, and willingness to follow his discoveries as far as they take him--no matter how you feel physically or mentally, makes me a better mother. You have created a shield that encapsulates him in thrilling joy and creates beautiful and comforting moments that preserve our life together through the most challenging days.

You never fail to exhilarate Sasha. His whole face is alive with wondrous love when you walk into the room. He looks at you directly with that bright smile and the spell of da da is realized. The magic lights on your face as well. But whether you are here with us or away, all day long is da da da. So much of you remains with him even when you are not home. I know that you worry about your time away while you are in the hospital and it is certain that he will miss you. Believe that I will do what I can to bridge the distance. I take comfort in my faith that this separation will be brief and only physical. He is your son; you are his father. You are printed on him and inside him. He is saturated with his da da. You are the place he wants to be; your bond is a seamless connection that will never be diminished. There will be no gap between you.

The child who emerged from me is a child that bears more than a resemblance to you. On meeting Sasha, people have commented that it seems I have given birth to another Aaron. He has your face and your spirit. I can only hope that he will have your character--that same combination of brilliance and humility, playfulness and commitment. You are powerful and determined but always gentle and empathic. You are a man unlike many others. With you in his life, I know that he will be as incredible in his own right as you are.

One day you will share your adventures with cancer and he will wonder how any of this was possible when you were always there for him. One day we will tell him the miracles in our life. For now I tell you. I will not be consoled with memories. Know that we will make more. Seeing Sasha so perfectly curled up on your lap this evening, it is easy for me to imagine the life the two of you will have together.

Happy Father's Day. I love you.

Michelle

gathering

noreply@blogger.com (seekingmother) — Thu, 17 Jun 2010 22:59:00 +0000

I know what I have lost; I am waiting to learn what I have gained in its place. Understand ing will come only when we have moved further along this path of healing.

Though some days it is difficult to breathe under the weight of this uncertainty , other days I feel blessed by the unfolding mystery of our days and know that we will emerge from this with extraordina ry wisdom.

How do I know this ? a friend asked me the other day and all I could answer was that I believe that Aaron will triumph in this experience. As much as I often struggle with the commotion of our life or find myself preoccupied with what could happen, or feel fragile in the face of my world as I've known it falling apart, my vision does not include a life without Aaron. I have wondered if holding tight to this vision is a way of protecting myself, but in the end, it all comes down to faith. And I have faith in Aaron.

I cannot be positive all of the time and there is often little time to sit still with my thoughts and examine this experience. Instead of grounding myself in what is happening on a deep level, I am grounded in the merciless nagging details that must be attended to and completed. Each day I work to tip the scales and transcend fear so that I can appreciate the present even with Aaron's fluctuating health. And it is work to maintain joy when so much is at stake, but it is the best kind of work, the work of loving a beautiful man and child.

We are in the midst of a month of testing. Though some of it is to determine where we are in terms of a remission, much of it is required by the insurance company before they will allow the transplant to take place. They want to determine that Aaron is up for the procedure. Tuesday Aaron was in Boston for a bone marrow biopsy and pulmonary functions test. Today is a series of scans with more next week and the week after. Intermixed is additional chemotherap y and doctors' appointment s. The details are being gathered.

Last week a social worker from Dana Farber called to assess the mental state of our family going into this process. The call was unexpected and stirred many emotions in me. As I listened to her cautionary words about the preparation , procedure and rehabilitat ion, and her description s of how difficult these first hundred days will be, my mind incremental ly weighed her considerati ons and merged them with my own. As part of her intake, she inquired about our support network, delving into specific questions about my family and Aaron's. She was immediately concerned about my ability to make it through this situation without a tremendous mental toll. My having lost so many family members to prolonged illness apparently puts me at particular risk for crisis if I shoulder too much of this alone.

As a therapist, I understand the impact of old grief and loss resurfacing at times of great stress. Feeling safe in this world is not easy when you are always looking around the corner for the next thing to be taken from your life. Having a young toddler certainly increases the pressure, she added. This is why I am taking a new approach and living as much as possible for the day I am in without measuring the odds. Still her concerns struck a chord and I began to consider more fully what special combination of ingredients will allow us to turn this obstacle into the best time in our lives.

It is critical, she said, that we have people around us that we can really count on. Do we have people to fill the space of this monumental process? I wanted to believe that we have a strong network, and desired to tell her this, but in the end, I wasn't sure if we had a unified team in place. She asked me to lay out our plan for the next three months and through this, I realized that there are many concerns and even more gaps. Though my friend, Lisa, has gone to great efforts to create a community to buffer us during these difficult months, few people have been able to rally. While Lisa has tried to be a catalyst to draw people to us, perhaps illness is a stronger force in funneling people away.

How much is enough? I now must wonder. I don't have any answers. But there are reminders of those who are present with us and I want to take a moment to thank my friend, Cara, who sent two of the air purifiers we need to make the home safer for Aaron; and Jake and Paul, who sent gift certificate s to Amazon so that Aaron might purchase some items that he needed or desired. I can tell you that Aaron has bought some serious reading material. I think he plans to build an empire while he recuperates.

Jake traveled from afar to accompany Aaron to his doctors' appointment s in Boston on Tuesday. Though it was a long and tedious day of waiting, Jake lifted Aaron's spirits and provided much needed camaraderie. He also gifted a talisman for Aaron to wear as good luck--a battle necklace, a sword to remind Aaron of his power.

My cousin, Jill, has been tireless in her efforts to help me prepare the house for Aaron's post transplant recovery and somehow manages to also make meals and give Sash some extra attention. My friend, Tary, has come to lend me a hand on several weeks and my friend, Polly, has nurtured the little one in her special way so I can accomplish a task or two and also delivered a few delicious meals. A woman I have never met, but am getting to know, Adele, has sent a few meals and offered many wise words of support. And thank you to Mary and Leslea and Paula who sent a meal from a distance. Those were relaxing nights knowing that we had one less thing to manage.

I also want to thank those who have committed to help us in Boston with Sasha and other daily needs: Louise, Elana, and Sarah, Lisa, Jill and Tary. And Frances and Norm who will love and care for our dogs while are away and assist with the the last minute home preparation s.

And to those of you who have contacted Lisa and offered to try to find ways to pitch in or reached out to us with words of support and encouragement.

Last night Aaron brought home a care package from two colleagues at work, Nina and Jodi. It was the first care bag to arrive and as I watched him lay out the DVD's and puzzles, I forgot initially what this bounty was meant for. And then I remembered. In one month, Aaron will not be sitting on our couch, flipping through movies, he will be in the hospital and we will be underway. We did not speak of what we were both thinking. Instead we discussed the selections and reasons behind them instead of imagining what will sustain us through some endless days. I ogled the items instead of envisioning the hospital space or the central line invading his body. I told him how wonderful it is to have friends that want to make his experience more tolerable and we both smiled.

There are layers to every moment. Unknown and familiar, anguish and appreciatio n, pain and relief, despair and delight. Some days it is as if nothing has happened and yet so much has happened. We are following a road that goes on forever and this is what we must wish for as we stand nearer to the beginning of this trek toward Aaron's continued life.

As we take one step and then another, I look for the presence of friends and family who will hand us water and cheer us on, who will bring changes of clothing and comfortable shoes, who will relieve our encumbered arms, who will walk beside us from time to time, or even carry us for a stretch, and for those who will sit with us while we rest without inspection or projection, just company. We look forward to meeting you on our travels.

a dog baby late afternoon story

noreply@blogger.com (seekingmother) — Thu, 17 Jun 2010 01:12:00 +0000

my birthday

noreply@blogger.com (seekingmother) — Thu, 10 Jun 2010 22:46:00 +0000

Birthdays are days when one's soul mingles with the divine. It is an opportunity to aspire to more because the universe is more receptive to you and your place in this world. I've been told this by many teachers but I don't know if I would have believed this as a child, having one too many calamities occur on this day and experiencing many other years when no mention was given to this day as one to honor.

When I woke up on my birthday morning, exhausted after another night of the restless sleep which is characteristic of Aaron's long chemo weeks, I wondered if this year was also one to to let pass without ritual or regard. This was the second year in the past few when Aaron received chemotherapy on my birthday, and the third birthday this year, having spent Sasha's and his own also hooked up to an IV. As the day began, I spent many hours setting up appointments for tests and evaluations and more tests and evaluations, and sorting piles of medical bills and worrying about funds, and my spirits plummeted. And then Sasha took a nap, not a long one, just enough for me to shower and sit with my thoughts.

I meditated on the reason and meaning for my life as I reviewed my past year. It was the best of times, it was the worst of times echoed in my head. How much this resonates with me. The birth of Sasha enhances me, Aaron's illness depletes me. Most days I am not certain I can accept that this situation is meant to develop me or progress my soul, but I want to have faith. When I heard Sasha stir, I promised myself that I would not let the day of my birth pass without renewing my commitment to our path wherever it may lead us.

I will be more devoted to understanding and celebrating my life as it is today. I will be more excited about what this new year may bring. I will be closer to the divine, more open to bliss, and to witnessing Aaron's rebirth with gratitude and strength.

Until I need to remind myself of this all over again. And I am certain I will through the days ahead of us.

Green You Say Green

noreply@blogger.com (seekingmother) — Wed, 09 Jun 2010 20:59:00 +0000

The Color of Dreams

noreply@blogger.com (seekingmother) — Tue, 08 Jun 2010 04:00:00 +0000

Welcome to the June Carnival of Natural Parenting: Outdoor fun
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared their stories and tips for playing outside with kids. Please read to the end to find a list of links to the other carnival participants.
***

Where there are flowers, there are faeries. Just a few steps into the garden, my son and I slip away into another world where nothing is at it seems. We drink in lustrous streams of color, alluring scents, bees humming, shapes and textures and tastes, waves of energy, healing sun, and the secrets and wisdom known to those who sit with plants, touch them, taste them, listen to their words tracing our ears like a warm breeze. The garden is a womb for conception and growth--it is life itself--and into this space I bring Sasha, so that he too can experience the magic of the green world.

He makes his way one foot in front of the other-- a tip toe, a slip slide, a bare foot print in the dirt-- with the caress of the soil, warm and damp on his skin. He crawls through the gardens on hands and knees while the dogs follow close behind or lead him further than he has gone before. He sees this world close up and down low and because of this, he knows that he breathes the same air as the creatures around him. Or he will. This is my hope, my dream.

Damselflies are faeries in disguise," I tell him this morning when one lands on his arm. A month ago, he would have jerked his arm away instantly. Today his face reveals curiosity, acceptance, enchantment at this creature with long luminous wings, and he remains very still, waiting to see what will happen. I don't know what he is aware of at this young age, how much he perceives, but still I set the stage for the time when we not only point to what is visible and known, but for the moments when we search for what cannot be seen but that we believe to exist.

Before this busy year, my garden was something to behold; now there is much work to do, and yet still it thrives like a child's imagination, like my child who joins me as I work an empty or overgrown space for a few minutes at a time instead of whole days. Once it was a hypnotic and backbreaking process, now it is a domain of discovery for him, of rediscovery for me. Some visits we are side by side; others I move through the plants tending to them and he observes with patience or follows where his own instincts guide him. Today as we weave moments together, we lay our tracks on our land.

"Faeries allow us what they wish us to see," I say as ribbons of purple bloom blow in the wind. "There is a faery for each flower." Sasha leans in and touches the beautiful, delicate foliage, then runs his fingers along the masses of tiny flowers. A month ago, he did not like the feeling of plants against his bare skin anymore than he could tolerate the grass against his feet. Now he runs naked and free without hesitation like a flash of light-- or a faery-- reminding me of everything that is to come.

And there is so much ahead of us with Sasha just 15 months old. There are stories to tell and so much to learn about even this particular flower that he holds in his hand. "A flower," I tell him, then "salvia" even though I'm not sure if he yet recognizes the word flower. Someday I hope he will understand the plants' parts and processes, say their names like his own. I hope he will know the plants intimately, their desires and needs, personalities and souls. Someday I hope he will witness a sparkle of pixie dust, a small sound, a whisper or giggle or sigh and know that he is in the presence of something magical and that he will leave out small treasures that will bring worlds together.

Green you say green, the color of dreams.

***
Visit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:

Garden Treats — Asha at Mom Costume has once again been bitten by the gardening bug — and this time her baby's tagging along for some fresh air and dirt exploration. (@titbagsandsnoot)
Outdoor Free Roam — Mamapoekie at Authentic Parenting follows her daughter's lead whenever they go outside. (@mamapoekie)
Summer fun in Austin with a toddler — Jessica at This Is Worthwhile is brainstorming ways to beat the heat in Texas. (@tisworthwhile)
summer fun… — Mandy at Living Peacefully with Children is looking forward to spending the summer outside with her children the way she used to spend summers with her mother.
Outdoor Fun for Pre-Walkers — Maman A Droit has figured out ways to let her pre-walker enjoy the outdoors. (@MamanADroit)
Summer Homeschool Fun at Camp Review — Deb Chitwood at Living Montessori Now discusses how Camp Review motivated and captivated her homeschooling family. (@DebChitwood)
Digging, Tree Climbing and Puddle Jumping — Laura at Laura's Blog bemoans the loss of her girls' climbing tree but knows they'll find something else just as naturally tempting.
The Sweet Smells of Summer — Erin at A Beatnik's Beat on Life is looking forward to the many smells of summer she and her daughters enjoy and identify. (@babybeatnik)
June Carnival of Natural Parenting: Outdoor Fun — Sybil at Musings of a Milk Maker is a confirmed couch potato who can't help but be inspired by the outdoor opportunities Seattle offers her family. (@sybilryan)
Take a Hike — Michelle at The Parent Vortex connects with her family and the Earth on frequent hikes in their Pacific wilderness. (@TheParentVortex)
Following Paul — Julie at Simple Life gives her kids unstructured time to dig in the dirt and pick mulberries. (@homemakerjulie)
Instilling a Love of the Outdoors in Your Baby/Toddler — Tessasdad at Stay At Home Dad in Lansing offers a photo book of tips for helping your little ones enjoy the outdoors. (@tessasdad)
Camping, baby! — Jen at Grow With Graces has easy tips for tent camping with a little one. (@growwithgraces)
Think Outside the Easel for Summertime Fun — Acacia at Be Present Mama finds several ways to bring art fun to the outdoors.
Outdoor Learning in our Urban Environment — Andrea at Ella-Bean & Co. has found ways to get grass between her daughter's toes, even in the city.
Outdoor Education — Alison at BluebirdMama offers parents tips and resources for making each outdoor excursion a learning experience. (@childbearing)
Turning Inside Out — Christie of Childhood 101 finds kids get a kick out of taking indoor toys outside. (@Childhood101)
Watching Peas Sprout — Deb at Science@home combines fun with purpose in this educational outdoor activity. (@ScienceMum)
How To Create a Pirate Treasure Hunt & Other Easy Outdoor Pirate Activities (June Carnival of Natural Parenting) — Dionna at Code Name: Mama has pirate-themed play ideas for ye scurvy landlubbers. (@CodeNameMama)
What We Do — Luschka at Diary of a First Child has managed to expose her 8-month-old to a wide variety of outdoor fun, even with the notoriously dreary UK weather. (@diaryfirstchild)
Summer Fun — Darcel at The Mahogany Way finds her family's visits to the beach refreshing in so many ways. (@MahoganyWayMama)
Playing outside without a backyard — Sheryl at Little Snowflakes doesn't let the lack of a backyard stop her family from enjoying the outdoors. There are plenty of things to do outside of your yard! (@sheryljesin)
Having Fun Outdoors, Playset Free — Guavalicious at They Are So Cute When They Are Sleeping has resisted a backyard playset in favor of the regular backyard. (@guavalicious)
Moon Gazing with your Toddler — Paige at Baby Dust Diaries is keeping her toddler up at night, but it's for a good reason: to share the wonders of the night sky! (@babydust)
the great outdoors — The grumbles at grumbles and grunts wonders whether her urban child can experience the same free-range childhood she enjoyed. (@thegrumbles)
Let's Take It Outside! — NavelgazingBajan at Navelgazing is looking for ideas: how can she spend time with her pre-walker outside this summer? (@BlkWmnDoBF)
A home by the sea: June Carnival of Natural Parenting: Outdoor fun — Lauren at Hobo Mama is living her dream of a home near the beach, and taking full advantage of it. (@Hobo_Mama)
An Outside Girl — Zoey at Good Goog moved her family to (almost) the middle of nowhere so that her outdoor-loving girl could have more grass and less concrete. (@zoeyspeak)
Neighborhood Nature — Kelly at Kelly Naturally has learned to connect with the nature she has instead of mourning the nature she misses. (@kellynaturally)
Building Lovely Memories of Swimming, Spiders and Gravestones — Joni Rae at Tales of a Kitchen Witch and her family are simply outdoorsy people. (@kitchenwitch)
"Buh-Bye" Season — Danielle at born.in.japan must leave laundry behind and follow her son's call to the outdoors. (@borninjp)
Backyard Camping — Becoming Mamas took her family camping very close to home! (@becomingmamas)
The Color of Dreams — Seeking Mother at Woman Seeking Mother makes gardening magical by teaching her son that each flower is a faery. (@seekingmother)

memorial day

noreply@blogger.com (seekingmother) — Tue, 01 Jun 2010 02:33:00 +0000

My mother died on Memorial Day in 1978. Even on the years when the date, May 29th, and the holiday don't overlap, I always observe her death on this day, for this is when I understood what dying is like.

On this day my mother is full in me and though I hoped to write much more in her honor, tonight I remember her as I am able.

My Life as Story

noreply@blogger.com (seekingmother) — Fri, 28 May 2010 01:00:00 +0000

For many years, I kept what was sorrowful in my life hidden, in favor of something more acceptable, but still it was usually too much for the person who'd asked a question as innocent as where do your parents live to receive an answer they were unprepared to hear.  I'd immediately recognize the expression of disbelief that would slip through without their permission along with their appraisal of me-- how much is she in need, for certainly there will be need under these circumstances-- and I'd feel that familiar ache in me that demanded no more questions which could further separate me from belonging.
I understand that people want to witness a beautiful parade, not a procession of tragedy.  Some days I wish that I could see into the future and disclose the happy ending that may allow people to feel more comfortable reading on, but I have no truths to offer. I can only promise that something will happen. It always does.  Still I've finally come to realize that my life is sacred, and that any limits on it makes it all the more so. There are times that I'd love to go to sleep and wake up on the other side of this nightmare with Aaron already healed from his disease, a bright future stretched out ahead of us; but I also desire to remain very present to the mysteries that will likely be illuminated through this process of reclaiming Aaron's health, and to the beautiful moments that remain ours each and every day despite our particular burdens.

As I sit down in front of the computer today, I wonder what I expected would be unleashed when I wrote about my mother's life and my childhood and my mother quest, and the state of Aaron's health crisis? In the face of several recent incidents, I've begun to consider whether or not I should continue to write my life at all or instead write something that people find more palatable. Should I return to drawers full of notebooks or to telling other people's stories for profit or writing fictional accounts that simply skirt the edges of my life? Can I still write with conviction and passion and dare I say it, pleasure, even when writing the stuff of sorrow, and even when I may be losing friends and readers, not gaining them?

I recently wrote a post detailing the days following Aaron's diagnosis with leukemia. Though I rarely receive many comments on my writing, several people were in touch to let me know that they found the post too sad and too long to finish reading until the end. I meditated on these comments, mulled them over, pulled apart the issues, and finally concluded that these words may capture the entirety of my situation--it's just too damn sad and long.

With all of my secrets coming out as I write my life from its source to its current trajectory and Aaron's upcoming stem cell transplant, I have to wonder how many people would cross the street to avoid me if they saw me coming. I recently cornered a friend in a Facebook chat after speculating for these past months why she, along with others, were conspicuously absent from this critical time in my life. I told her that I missed her and welcomed her counsel, but even before I received her reply, I sensed what was coming. She explained that what was happening in my life overwhelmed her to such a degree that she could not be present in my life. She thinks of me often, she added, and wishes me all of the best, but reiterated that contact was not a good thing for her at this time. I replied that I wished it could be otherwise, but that I accepted her decision. And with this, our little chat box disappeared along with any hope of what I most need--to be surrounded not isolated.

Another friend, an old friend, Tary, who has known me through many transitions, shared that her recent absence in my life was not simply due to the state of her own. She confided that she did not know how she could help, or how much she wanted to help, or if what she had to offer would be enough and that this made her feel guilty and so she avoided me. As more time passed, she felt guiltier still, and it took some time for her to push past her hesitation and assumptions about my needs and just resume her place in my life, the one she has always occupied, that spot which is unchanged by what is currently unfolding. And in doing so, she has realized that I am the same woman she has known, and that her friendship is what I need most. She has encouraged me to use her name so that others may realize that they are not alone in their fear to approach me, and so I disclose her identity with permission and also gratitude.

It is a writer's crime to write. Words are dangerous. They reveal too much even when I try to protect everyone except myself. And this I learned from yet another significant person in my life in the past few weeks. I was given the choice to write about our relationship or have our relationship. I was told I could not do both. If this is the case, I will ultimately have no bonds or ties as I now write about almost everything. Nothing is off limits. So this leads me to an important question: is the very act of my writing about my life the thing that is driving people further from me?

When my friend, Lisa, suggested that we allow people more access to what was unfolding in our lives with Aaron's cancer and the upcoming transplant, Aaron hesitated. He is by nature private and uncomfortable with the idea that anyone might feel compelled to help if they believed him to be in trouble. A year ago, before I began to blog my story, I would have agreed with him, but for other reasons. I have always been anxious at the thought of being perceived as different from everyone else. This is a long-standing issue for me--not wanting to stand out for the wrong reasons. I was always the girl with no parents, the one raised by her grandmother, and a crazy one at that. I was the orphan, the one on public assistance, who only learned what this meant when a dentist tried to touch my breasts and told me how much he hated welfare patients when I resisted. I struggled my whole life to escape being different.

From a young age, I noticed how much a person's demeanor changed when they heard even the smallest detail of my story or as my close friends have affectionately named it, my ordeals. As I child, I understood that I was not the same as my friends, that having no parents was not something to claim outright, and yet I had no choice. Everyone knew from the first moments of meeting me. Where is your mommy? Where is your daddy? And so I told them the truth. She's sick and He's dead.   On some level, I was protected until my mother's death. Even though she did not function as a mother, while she was still alive, I had still had one.   The morning after my mother's death, my grandmother gave me a note to show my teacher. Michelle's mother is dead. That's all my grandmother had written. The teacher stared at me, looked deeply at this catastrophe standing before her without betraying any sign of emotion. Instead she sent me to my seat where I remained immobilized until recess. When we walked out the door, she returned the note to me. My friends asked if was a permission slip. I handed it to Keith as we sat under a tree. He read aloud these written words of my situation. None of us moved until the bell rang.

As I grew older, I told fewer people about my life. I allowed my peers to speculate on my circumstances rather than offer them any details. I learned to stay with those who had tasted some tragedy that prevented them from being in a glowing center stage. Out of sight, out of my mind, my grandmother routinely told me and most days my life seemed manageable as long as I could keep my classmates out of my house.

This strategy worked until I reached college. No matter how much I wanted to remain silent, people demanded answers to their questions. Who are you and where did you come from? How was I to answer? After the first time I told someone that my mother had been dead since I was ten, and that I was raised by my grandmother, I never shared my life so bluntly, so directly ever again. No, once I saw that first look of anguish, I knew I would never again distract anyone with such details. I memorized the camps, and schools, and clothing and behaviors, and tried them on like the clothes I also mimicked, until I became someone I believed indistinguishable from all of the rest. At times all of my new stories clouded my brain. I no longer remembered who I was, only that my life was not right, and that I would be disfigured in their eyes if I was honest, and so I encouraged the stories to come forward, molded them for who I was with and what would suit them, please them even. It did not take much for me to betray my life in this way.

The only way my story was revealed in those years was through movement. I performed in as many dance concerts as possible each semester. It was up to the audience to translate me in motion into something that stood for my life. Whether or not the picture they formulated matched my circumstances did not concern me. All the better that they should see me poised and in control and not the little frightened girl in an unfamiliar world.

Aaron first encountered me as a fellow dancer. We fell in love over many months with very few words exchanged between us. Nothing could have been more perfect and yet this could not be sustained. Eventually he wanted to know the facts as well, but by this time, I'd lost command of them. He wanted me to return to who I was but who was that person and did I want her back? I slowly began to reassemble my history only to fall headlong into my grandmother's theatrics. She had stories of her own. She'd been married more often than I knew and my biological grandfather died of Huntington's disease. My mother had not been in an accident, but also had Huntington's. And my father was not dead, but unknown.

The need to cultivate a new reality resurfaced but I kept no further secrets despite the contempt I felt for this news. I was under shade at all times during these years. I knew that people would wonder how Aaron could marry a woman who may die in such a way. Perhaps people whispered it behind our backs. Some told me to my face that I should never get married or have children. What was the point? My life was doomed. But then suddenly it wasn't. The gene for Huntington's had been discovered and I was one of the first in the country to be tested. And I didn't carry it and so the legacy was over. Though I rejoiced, I still was helpless before my past and could not breach it authentically with the words I'd been honing for other people's stories as a writer and editor. It was still too much for me to make known.

When Aaron was diagnosed with cancer, I was the woman whose husband has cancer and I once again saw those looks that revealed pity and fear and gratitude that the person hearing it was not in my position. And so we told no one unless it was essential and this suited us both. When Sasha was conceived, things began to shift in ways I hadn't predicted. He pushed out my stories as he carved more space for himself inside me. Each week something new reentered my mind. With his birth, even more came forward and I found myself writing my story with honesty for the first time. I was writing my history and my motherhood, but my life was still compartmentalized. Aaron's story was sealed until we realized that our lives were about to blow open. Aaron had relapsed and there was suddenly a need to tell those around us so that I could protect him from infection. I found it increasingly difficult to write with honesty and still somehow avoid something that influenced me nearly every moment of every day and so I also began to write about our cancer situation on this blog and recently on the site devoted to Aaron's journey.

For years people told me to write my life's story, but now that I am naked before you, do you wish my clothes back on, or even further, to see me in disguise?

If you are reading, let me know if this is the right path for me. If you are reading, pass my blog along to others. Please don't delay, don't use discretion, act with abandon from the heart. Comment, ask questions. This is my life. Do you want to hear more? If so, come and stay away and share your thoughts.

Worldess Wednesday: Spring Fever with Friend

noreply@blogger.com (seekingmother) — Thu, 27 May 2010 01:20:00 +0000

Blood

noreply@blogger.com (seekingmother) — Thu, 20 May 2010 22:45:00 +0000

Before this year, there was no one with blood ties to claim me. All of my relations were by marriage not birth. Now I am growing heavier in this world with a child and a cousin, who reentered my life last summer after a long absence.
Though I was curious and intrigued that we had found one another once again, I questioned Jill's intentions when she suggested we meet just a few days after our first email exchange. Who was she and what did she want from me? We had not parted on good terms. There were misunderstandings, bruises, and betrayals-- mainly between her mother and I-- but I didn't know how much of this discord she carried, nor how much I could relinquish. And though my son had brought my history alive in my mind from the first moments of his conception, I wasn't sure I was ready for my past to walk through the door.

But three days after our first communication, Jill sat waiting for me in front of my house. I could not help but wonder if she was deranged like others in my family and guarded against desiring her in my life from the first minute I laid eyes on those features once so familiar to me. With some anxiety, I welcomed her into my home, reassuring myself that she would likely be here just an hour, and surely no more than two, and that this was something I could manage even if there were more moments of sharp tension than fond postcards of our shared life. As the hours passed, we spoke of many incidents and issues from our tangled history, and while I experienced a certain rawness that still needed soothing, I also rediscovered things about myself that were lost or hidden or forgotten-- things that I hadn't even realized I'd missed but clearly did. Before I knew it, the afternoon had become evening and she was still here, and though I expected to see her silhouette far off in the distance the moment I declared my need for this relationship, I could not deny that this bond could be essential to me. But could pain burn off and make room for a sweet scent? I wasn't sure but was willing to find out.

Over the past few months, the years separating us have slipped away, and what was once a slender connection of sharing information has now branched into something significant and comfortable and very present. Is this your sister? someone recently asked. Our mothers were sisters, we both answered. As I thought about this, I am more like her mother's sister, as we were both raised by the same peculiar woman, who did not use mothering to its best advantage.

The day that I saw Jill again for that first time, my friend, Polly, predicted that Jill's reentry into my life was not coincidental, that she was back for a reason and that it might change my life at this fragile time. Though Jill is just eighteen months older than myself, she has told me that she will be my mother, that she wants to make sure that I am safe in this world. We are blood, she reminds me each time that she is here. Jill and my son are blood. There is something powerful about this for me.

Even though something went very wrong when we were children, now when we discuss our childhood do you remember stirs memories that I treasure even if painful. We spend days cultivating the land in warm sun and rain, tending to the details of my life together. We dig up history like the dead plants in my yard. We do not waste anything. We rearrange, prune, tend, nurture, start over where we need to. This will be something to see, to embrace, this garden between us when in full bloom.

And there is something to genetics. I can think of no one else in my life that would find shoveling and snow blowing in our pajamas during a blizzard to be exciting, even fun. She brings news to me that no one else could. You were a quiet baby so Sasha's wildness must be more like Aaron. There is no one else in the world who could deliver this information to me, these vital details which I have missed all of my life. Jill's presence gives me a new history and a new direction. I am no longer completely an orphan.

Before this year, there was no one with blood ties to claim me. Now I am building a nest that will include my new family and Jill is helping me. We each bring items to this creation, scraps and pieces we have salvaged. We gather and collect, borrow and share. Straw and feathers and string, our most valued treasures, our most feared memories. Sometimes I stop and take a second look at what I am bringing, my version, and look at the sum of this, this past and present steadily merging. This is our place where we can look back over the terrain of our lives and stare into our future. How far can we see into the years? I watch her as I point things out. Is she ready to know what I know? Does she squint when I show her what I see? What remains and vanishes from this perspective?

This is our place and the strands are strong enough to hold us--we birds of the same clan.