Tuesday, February 4, 2014

Notes from the Hospital Waiting Room

This is Amy's husband, Paul, writing from the hospital. 

A quick note that Amy had asked me to send you to say that the main surgery is behind us, that the surgeries went without complications, and went as planned. I think the current plan is for us to stay here until Thursday afternoon, avoid the storm, and then get released.

Some specific fantastic medical news, though more later. The sentinel nodes were negative, looking at 2 on the right side and 1 on the left side. The skin under the breast looked good and the chest wall looked pristine, so the likelihood of local spread may be negligible. We will know more on that in 2 weeks. Surgeon said that Amy is in really good physical shape so they were able to move fast and efficiently. So from what we could tell now, this is as good news as we could get. I was sobbing too much to write this little bit. I wrote the below before that news. Ok. Back to sobbing.

Since Amy is in reconstruction, knocked out, sleeping, recuperating, this is the one time when I get a chance to say more than she does, holding up our side of the conversation, (so Rena, Jacob, this time I will skip the troglodyte role.) So this is what I have been thinking about, and sorry for the typos.
I have been sitting here in the waiting area for a few hours. I think about the surgeons and whole team at work. We met them previously and they all seem at the top of their game. (Thank you so much Josh.) Which fills me with comfort, as I let go of the things that I have no control over. Looking at the space though, I think how Al-Razi would have changed the surroundings that these skilled folks are working in. And how that nice Islamic gent with a lot of great medical foresight including starting good hospitals, led, a thousand years later to a nice Jewish boy in Denver working on the aspects of medicine that helped Amy through this month, and that will help her heal when the surgeons are done with their part. (Thank you so much Jacob, and while I am at it, Michael for feeding the body and William for feeding the soul or I guess you would say soles.) What I am going to skip though is a string of historical facts, thoughts, dates, in the history of medicine, all interesting, but really those thoughts at this time were only there to provide me a sort of refuge to hide in, during some moments of terrifying, petrifying, anguish. So what I want to tell you is what stopped that anguish.

Just a few highlights from a string of thoughts:

Driving in today, the sun was bright, shining beautifully on the snow covered trees. Amy was listening to Dylan, and Dixie Chicks, and Paul Simon, and KD Lang, and Aoife O’donovan. Eyes closed she is singing along. She seems strong, sound, resolute. I am crying, sighing, singing. Your basic hysterical mess. Whenever she opens her eyes to talk, I am looking away, I don’t want to worry her. As we get closer to Boston, I answer her question by sighing, laughing and big tears just popping out of my eyes. We both laugh then. Which is a sort of theme that comes to mind here.

Way back in the day, Amy got pregnant. We flew back from Nebraska to Portland to have the birth, since Nebraska at that time did not allow home births. Anyway, we flew back, and a few days later with Ed Hofmann Smith as the primary attendant, Amy’s contractions began. The whole birth experience took place in Amy’s sister Nancy’s apartment bedroom. A few hours of labor and Sophie was born. (I have to say, I was exhausted. Rubbing Amy’s back through the contractions nonstop breathing coaching, it’s hard on a guy.) Oh, I should say looking at her, Amy was full of life, screaming for joy, beaming, laughing, crying, hugging, kissing. She looked great. Anyway, Ed tells Amy to lie down and rest. Pretty soon he leaves and it is just Amy, Sophie, Nancy and me in the bedroom. Sophie is lying on my chest, skin to skin, her arms hugging me, as Amy is collecting herself. Now, all three girls are lying down on the bed, as I am telling them a shaggy dog story, playacting it, grabbing a towel and using it as a cape in the story, jumping on the bed, on the chair, on the bed again. Sophie, on Amy’s chest, falls asleep before the punch line, but then again her she didn’t get my sense of humor at that time. Amy and Nancy however, are guffawing, laughing hysterically, then crying and then laughing and laughing so hard they begin to cry again. Randomly, after nine months of pristine diet, the doorbell rings, as someone had ordered Chinese takeout. I cracked my fortune cookie and read, “Wisdom is the principal thing”, And since Sophia is the sort of goddess of wisdom it seemed to fit the moment. Anyway, that’s not what I wanted to say here.

The next day we decided to go out for a short walk, which was episodically broken up by lots of rests. The one I remember most had me sitting on a park bench, Sophie, wrapped up, lying on my chest (working out what my story meant from the night before), and Amy lying on the rest of the bench, head resting on my lap, as we gaze at the frolicking Mallard ducks swimming in the pond at Laurelhurst Park. I am looking sort of calm on the outside, as usual, but inside my mind is racing. Freaking out, sort of, on the inside. I mean this stork came and dropped off a perfectly good-looking kid, but without any operating instructions. I mean we were kids ourselves, and didn’t really know what was going to happen next. What is day two like? Day three?

The only operating instructions came in one sentence from the Chinese restaurant in the line from the fortune cookie. As the panic began to swell, (still pretty stoic on the outside) I looked at my benchmates. Sophie, nuzzled in and asleep. Amy resting, and then slipping off into naptime. And well, I kind of knew everything was going to be fine. We just went through this intense thing, and she looked so peaceful, calm, content. I kind of felt like, well, we are in for some kind of ride, this lifetime. It is going to be a blast, so I better hold on and she better hold on.

Misha came along soon after that. Now we are living in Amherst, still young, but had a little handle of the parent game. Another home birth. This one in February. There are, I don’t know, maybe a dozen people in the house, sort of mingling around, having a good time I guess. I am in the bedroom with Amy, and the midwifes. Contractions intense, back rubs, massages, breathing exercises. Everything seems to be going as it should, and then it becomes sort of obvious when Amy hits transition. There is a fellow in the living room who found Amy’s conga drum and begins to beat out a rhythm. It’s sort of sweet and then becomes sort of monotonous, and then sort of irritating, and Amy screams out some sort of expletive and yells out to get him to stop that noise. She then closes her eyes. At which point we all look at each other and laugh silently, as the scene was just ludicrous. Still in transition, a very short time later, I reach over to show her a moment of affection, and she screams, “ I don’t need kisses I need oxygen,” and closes her eyes again, as we all crack up again. A little while later Misha is born. There are pictures of all of this. You can see Misha sleeping, Amy beaming, laughing, overjoyed. (In the same picture I look so beat up I look like I have suffered from malaria for 4 decades.) Amy jumps out of bed, and goes to her clothes and puts on her pre-pregnancy jeans and says, not bad right?! At which point we all really crack up, laugh, laugh so hard we’re crying. As the midwife, is looking at Amy with pride, at Misha with professional eye, and at me with some heightened level of concern, I am thinking OK, no surprises here. Amy is who she is. We are who we are. I am back on that park bench thinking about the future and knowing it will be OK.

A very short time later, its Jonah’s turn. Baby #3 in like 4 years. Our next homebirth, in the same room in Amherst. OK. We’ve done this before. This time in the Springtime, in the nice weather. Contractions, on and off through the day, beginning to escalate in the evening and night. To hurry them along, Amy and I are walking up and down Middle Street. Walking slowly. Slowing down during a contraction. After a while it gets more comfortable to lean on the mailboxes during a contraction, with me supporting, massaging her from the side or back. OK, labor begins, out comes Jonah. Yes, it was longer but the part I want to get to is the next day. It was a beautiful sunny day. Amy and I were sitting on the front stoop, taking in the sun. Amy in a chair holding Jonah in her lap, I am sitting on the step. Amy seems in bliss, as if she just ran a 5K and is thinking about the swim next. I look calm and relaxed. (Actually, at the time, the vision running through my mind was any cowboy movie, with me in the movie on all fours, lost in the desert, dry dusty wind parching me, buzzards above, and me whispering I need water, I need to rest, I need chocolate, I need a bed, my body hurts.)

Anyway, we look up as we see a distant neighbor walk up our driveway, getting close and saying, ‘Er…excuse me, but wasn’t that baby that size last year?” Amy and I look at each other. Straight-faced Amy says, that was his brother Misha, this is Jonah, “he was born yesterday, in a room in the back of the house!!” At which point the neighbor mumbles something and runs away, not knowing how to process that bit of news. We watch, and look at each other our eyes glistening with mirth. After a while we laugh so much tears pop out of our eyes. She closes her eyes and continues to take in the sun. And again I am left with that same feeling, that same image. Same park bench in Portland. We are going to be fine.

And that is sort of how it has gone, this little trip of ours. I have always felt that we have been blessed with more luck than we deserved, have had ups and down, but mostly, over these decades, the tears have been tears of joy, though sadly this is not one of those times. We have been mostly healthy, despite my sleeping and chocolate habits. But we have never taken health for granted. We know it is a luxury, built upon a lot of luck and some work, and that even when some work hard, the luck is not with them. Amy has tried, in all the ways you know, to pay back for the luck that we have had, to help where she can. She is primarily a very positive person, and that positivity has been a sort of godsend through this month.

However, this past month has been an incredible experience for both Amy and me. I have always thoughts of invisible strands connecting each person to each other person, some thinner some thicker, but still all somehow connected to each other. At various times in our lives these connections manifest, becoming visible and tangible. Your letters, telephone calls, emails, texts have been that, and have been so moving. You have really given her such a great support. Every one of you. Every one of you. Each one. To a great extent, Amy got through this month staying positive with your help. I will love you all for that gift you gave us.

So here I am on this bench in Mass General, sitting here holding Amy in my heart. With my thoughts and my memories. She is out of surgery. Double mastectomy behind. Reconstruction soon behind. Anesthesia is leaving slowly. I don’t know what the future will bring us regarding this. We won’t know the actual findings for a couple of weeks. When she wakes up, and when we leave this hospital, I expect her to be, well…be herself, Amy. Ups and downs for sure, but still Amy. She has never looked as beautiful to me as she does right now. Have a good night to all of you.


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