finding light

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.