Surgery and Recovery

Surgery and Recovery

I walked out of the doctor’s office, that bleak November day, alone with the news I’d just received. The surgery that had seemed such a saving grace 3 months ago, the definitive answer to this disease, seemed now less of a future savior and more of an ominous and unavoidable event. Still I had 3 months. 3 months between me and it. 3 months to buffer me. 3 months to prepare. 3 months to be with the idea of it. 3 needed after to recover.

February. Did I have a life planned for February? For March? For April? If I did, I couldn’t think what it was. Was my life that plain? Summer. I would have summer. I hoped. I’d read the website describing the surgery. That website I needed to read, wanted to read, the nurses and doctors section, because I had to know the truth, not just the patient’s truth. I wanted information. Information, knowledge, and truth were the only weapons I had.

Now this weapon weighed heavy on me. A quiver of arrows, but only so many. That was the doctor’s analogy for surgery as treatment - a quiver with a small number of arrows, each arrow a surgery. How many? No way to know. Each arrow critical to use at the right time. Wait as long as we could without waiting too long, too long so the surgery would be more complicated, too long so the tumor would start to impact the functioning of my body. That and maybe try whatever drugs looked like they might have a positive affect. That and maybe try the chemotherapy that works on colon cancer, the closest thing they have to this, that isn‘t really the same. Clues really - nothing definitive. There aren‘t enough of us to really know. There aren‘t enough of us to invest any big money or many great minds. This one doctor with this one small research lab. This one city, so far from my home.

Hours and airports away from home, I moved. I did. I called the shuttle to take me to the airport. I chatted about winter weather and studded snow tires, illegal here. I walked into the airport, checked my bag, got my boarding pass. I walked toward the gate. I stopped, sat in the row of plastic seats in the area before the gate. Alone in this spot, I watched people eating airport meals, luggage propped up beside their small tables. I watched people, seemingly normal people, doing airport traveling kinds of things.

As I watched, I thought how I would not be living a normal kind of life in 3 months. Were there things I wanted to do? So much to do. Ninety some-odd days, and then in one day launched into the unknown - total immersion in the unknown. And hope there? Was there hope there? The facts did not speak of hope. In this way they fed the shadows: uncertain results, risks, common complications, temporary benefits, waylaying. That is what this surgery really is, a huge dive and dig of waylaying with little hope for cure. Sometimes called de-bulking. Sometimes called cyto-reduction. Some how there seemed more power in this second term. The alternative? Certain progression, certain internal suffocation of the organs. The question only how long until.

These are the terms I do not speak out loud. These are the things I know people do not know how to hear. Although I try to find ways to say them quietly. I am developing a different way of speaking about them. But today… today, I am sitting with those web pages, with those detailed descriptions, with those facts. Tears well. Facts - find some hopeful facts. Do not be a statistic. Don’t be self-fulfilling. Be the small percent with unusual results. Someone has to be. Hope. Find hope. Numbness.

I pull out my notebook, turning to the pages just after my list of questions to ask at the appointment. I look at the list. So much to know. Here is what I write.

Fateful day - a day of decision making. A moment of knowing. The doctor today said surgery in January or February. Over the last year there’s a trend of mild increases and the CEA marker has doubled every 3 months. Enough trends to know this isn’t going to “lay down and play dead”, as he said - what we were hoping and watching for.

With the trends he’s seeing, he thinks if we wait 1-2 years I will be having physical problems, digestive problems, discomfort, more trouble eating. Best to do it now. Make sure my thyroid problem is settled and where my regular doctor wants it. Get off the estrogen. KEEP exercising.

Guess there’s no more time to goof off. Exercise and diet. The healthier I am, the faster I will heal. No more junk food or crappy eating. Guess that will be my focus. Note I did not say LIFE as I want to.

When I read this entry later, I see facts, fabricated hope because it’s what I’ve been taught to do- find the small light, believe in miracles. Don’t dwell on despair. But, there was so much despair to feel. To ignore would have been untruthful.

I make a list, but I don’t write in bullet points. I write phrases as if in little squares oriented differently over the page.

Making a list this way frees my thoughts from some of the ordered nature of making a list. My mind is freer to wander rather than move sequentially. Here, in small phrases it easier to capture some of the nature of what I feel without feeling a need to write more as I was in the journal entry. I write what comes when I write this way. After a page worth, I’m done writing and I put my notebook away and look around me again.

Do I look normal? I supposed I did. If I didn’t cry, I probably would, could, did. I sat for a few minutes with my cell phone in hand, intending to call my husband and give him the news. What did I want to say, what could I say about how I felt? I felt numb. What could I say about what I thought? I didn’t know what I thought. I knew what I was going to do. I didn’t know what it meant, didn’t know how it would change my life, didn’t know if it would work. Did I feel hope? Numbness. Did I think it would work? Numbness. What do I say? The words, the facts, were all I had. So I dialed and that’s what I told.

Facts are not friends of tears. Facts do not call out the shadows underneath the numbness. Facts, well, for some facts this is true. For telling how the doctor said I need to have surgery in February, facts could coincide with numbness without intruding into the shadows. For what I’d read about the surgery, for the anxious fearful sense those facts raised, I did not have words. I tried to describe it once or twice. It is horrific to speak it out loud: it is too much for people to hear; too much for the human soul to imagine; too much for the body to process as future experience. Reading those web pages required a will of steel driven by only by the sheer and raw need to know. I had nothing else in the face of indefinite and sparse information. Shadows become too close in these thoughts. Do.

I dialed. I told. I spewed facts, simple, cold facts without feeling. A small comment on feeling, given from some distant place. A need to acknowledge there was something felt, but done without feeling it. Facts. Saying goodbye when I soon ran out of any words that were safe to speak out loud in this public place. Next call, the same. And then no more. I could say no more out loud about this now. People still eating their lunches. Do I look normal?

The phone calls, strange, separate, distant. I am there, but not there. Did they know? Did I want them to know? Alone is good I think. I don’t think I could deal with needing to talk too long or too much right now. I don’t think I could listen too long to well meant words of hope. There is no room for these emotions. There is no room for many emotions at all right now. Numbness. Strangers are good. Airplanes, personal space protected - an ok place to withdraw, put up silent boundaries. But this thing, this surgery, I know is something that can not really be contained. Time will tick. Preparations will be made. Still I will come to that day, to the day, and it will be foreign to me.

My body is foreign to me now, although I know more about it than I ever did before. I sense, I can feel things are changing, are not right. Meals, bites only, struggled through, weight continuing to fall off gradually though I stop dieting. Fullness, unrest. Just simply something that is not right, living there in my abdomen. Too close, too much shadow here. Do.

I walk to the gate, stripping jacket and delivering what personal belongings I carry to the x-ray machine. My note book x-rayed - what if in x-raying the words of my life they could see a picture there? Would they continue to look? Would they see the fear? Would they see the tears? Would they see into the shadows any more than someone looking into the eyes of this protected soul would? Would they see what’s in the shadows? The numbness? The underlying fear? Would they know me? Can they see it in me now? Do I look normal?

I look back into the area I just left. The next time I come here will be for surgery. Will it look different? Will the same scene play over again with different people? Yes. This will not change. The world will not change because I am sick. The world will not stop because my life will be brought to halt. The universe will not care that I am facing the greatest challenge of my life. But then again, in the universe I am safe - so big a place that me and my worries are small and insignificant. As comforting as the idea of being small is, insignificant is not a place I can go. Insignificant has strange connotations to it that do not fit with numb.

I collect my things and make my way to the gate and wait. I have no more desire to write. My desire to express is dried up. Was it really there to begin with? I try to read, but find I am moving my eyes over the words and thinking different thoughts about the surgery, about being sick, about the facts. I don’t remember much else about the trip home. That part of my pondering is lost.

Once home, I do the only thing I can do. I prepare. Health, diet and exercise become my primary concerns, my primary job, my primary responsibilities. I take this responsibility seriously. I have to. Without it I am simply waiting and that is too much to bear. Getting as strong and healthy as I can before surgery is the absolute best thing I can do. There is such a huge impact to the body, and the recovery is so long, that being physically in shape has a huge advantage. So I get in shape.

I swim every week day morning. I take a Tai Chi class 2 nights a week. I eat healthy foods: no candy, no dessert, no snacks, no alcohol. I begin to feel the benefits of these changes. Accompanying them is a strange contradictory and competing sense of illness and health, internal and external, intentional and unintentional, direct and subtle combinations co-existing in this body. Three months goes by like this.

I prepare ahead for what I can - paperwork to do, questions to write down and ask. I am intently focused and productive. I become, I see now, obsessed with preparing what I will bring with me to surgery-things to do before and after. I can think of nothing worse than lying in a hospital bed day after day with nothing to do but watch TV. I spend hours preparing CDs with different focuses of music. I buy a recliner to sit in after the surgery. I clean things out, my clothes, my cupboards, my paperwork. I spend time with friends I may not see for awhile. I hand off my work projects to others, tie up lose ends, and document a lot of what I do at work. I struggle to find the right way to let people know what’s coming up for me. I pick and choose who I say what to, and I search for the right words to answer questions. I begin a photo documentary, a roaming gnome kind of photo journal, of my preparations.

My gnome is a triceratops Beanie Baby named Hornsly. She is a she because she has a bright red lipstick colored mouth, that no reasonable male triceratops would ever be caught dead in. She is teal green (one of my favorite colors), with yellow glassy eyes, a red triceratops hood/collar, and she is smiling. She takes my place in all these photos: lounging on her back in the red recliner, on the keyboard of my laptop with CDs and a walkman, on the shoulder of my friend when we visit, peering at the list of surgery and recovery questions, and many others. I feel the need to somehow capture this period, although I cannot write about it and have trouble talking about it. This photo journal becomes an expression of my experience. Today those photos sit in their photo-mat envelope. I have never been able to bring myself to create the actual journal as I intended.

On the day my husband and I are flying out, I am ready. Everything is packed. I have all the essentials and must haves recommended by others who have gone through this surgery: slippers, bathrobe, questions, paper and pen, laptop to stay in touch, and more. My activities are packed and will travel with me on the plane to keep me distracted: music, coloring, small crafts, knitting, more. All my paperwork, questions, phone numbers, things to remember, itinerary, hotel information, CT scans, medical reports, and more are packed. I have water and snacks. I am waiting, nervous, anxious, feeling queasy, and puttering to keep myself occupied as we wait for our ride to the airport to arrive at the house.

Our ride arrives. My husband is loading our bags in the car and chatting with her. I am overcome by a panic attack. My body temperature rises. Sweat breaks out all over my body. I start to shake and I cannot stand up. I feel like I am going to throw up and have diarrhea all at the same time. I can’t leave. I can’t do it. I am overcome by anxiety and I do not think I can make myself walk out to the car. I run to the bathroom. “We’ll be late,” I think. “We’ll miss the plane,” I think. I throw up. I have diarrhea. I am sweating and still shaking. I’m light headed and dizzy. I am afraid I am going to faint. I cannot walk out to the car. I have to. I sit on the couch. I have to. One thing at a time. Focus on one thing at a time. I run to the bathroom again.

I walk out to the car, my whole body reflecting the internal turmoil. I get into the back seat, barely murmuring a greeting. One step at a time. Just stay here, don’t move, and then the car will be moving and you will have to stay here. I move to a mental place as much as I can, not thinking much, but separating my thoughts from what’s happening in my body. I move my body like a puppeteer. Walk. Sit. Stay. Do not throw up. Go. You must go.

At the airport, I handle my carry on and the CT scans and give a hug. My husband deals with everything else. At the check-in counter I hand over tickets, and ID. At the security check I have to insist the CT scans I am carrying be hand checked. The of rest my precious cargo goes through x-ray. I make it to the gate and we find a place to sit near the windows that look out onto the airstrip.

I feel a little of the anxiety pass with my success in getting this far. I can do this. I am doing this. The worst seems to be over, although I can still feel the unsettled queasy sense washing through my body. I take a picture of Hornsly in the airport window, proof that she, that we, made it to this point. I get out my music, drink some water and nibble on some crackers.

The rest of the trip is uneventful. My stomach still can’t handle real food, so I have a lunch consisting of a banana smoothie and some more crackers. I don’t even really want this, but I know it will help to settle my stomach and that I need the sustenance. Hornsly is photographed along the way, including on the moving sidewalk in the airport where we change planes. Eight hours after leaving the house we check into the hotel.

We arrive on Friday, although I don’t have to be at the hospital until Monday. We decided it was better to be here sooner rather than risk a snowstorm and arriving late. So we have some time to fill. It happens that a couple who deals with this same disease lives in this town. She is an active member of the on-line support group I’d found and she and I had been talking. Her husband was a couple of months out from the same surgery I was headed into, done by the same specialist. They welcomed us warmly into their home, fed us dinner, and a new friendship was solidified. We talked little about the disease, and that was ok with me, and with him. Exhausted at the end of a long day, we returned to the hotel and slept.

The next two days run together in my memories: we visited the zoo; crossed over into Iowa, just to say we were there; had a disappointing brunch at a beautiful indoor garden; and toured the downtown area, checking out some small shops along the way. I bought a beautiful copper wire and blue glass magic wand thinking it couldn’t hurt.

Saturday night dinner is a special dinner because it’s the last real meal before starting a liquid diet a day and half before the surgery. One of the side affects of the surgery is decreased appetite and difficulty eating for a long period of time, so this last dinner has significance. We went out to eat at a nice restaurant, but I really didn’t feel much like eating. I was too anxious and I had trouble eating anyhow. It was an odd awkward meal, so much implied it being a ‘last supper’, but we tried. I was glad to be done with it and back at the hotel.

Monday morning around 10 or 11, I had a pre-surgery office visit, a last check-in and go ahead for the surgery. After that admission and I was assigned a private room on the special unit for patients like me who will need special attention. The room has a chair that folds out into a bed, where my husband can spend the night with me. I unpack my carefully planned things, and take a picture of Hornsly on the bed. The rest of the afternoon I have pre-surgery tests, chest x-rays, blood work and the like. Between and after tests, we pass the time playing cards, and reading. I accept the offer of medicine to reduce anxiety.

I meet the resident who will assist in my surgery. I like him a lot. I have questions about the scar, which I discuss with him. Do they use stitches or staples, and does one leave a wider scar than the other? He tells me they usually use staples because they are quicker, stronger and easier to remove if there is a need to go back in soon after the surgery. I tell him I’ve heard stitches leave less of a scar. I also try to convince him to do some body scarring art of a sun if they have to remove my bellybutton. He laughs, and denies he has any talent in that area. I tell him I am trusting my scar to his best judgement.

Around 7 pm they bring in the bowel prep, a gallon jug full of this pale yellow, lemonade flavored internal cleanser, ironically called Go-Lytely. I am supposed to drink it all over the next 3 hours or so. For me, this is the real moment I move from person to patient. I stare at the plastic jug. I am still deciding somewhere in my mind if I am going to do this, if I can do this. I think, and probably say, how it’s not too late to run out, to run away. Instead, I pour the first cup and I take the first taste. With the first swallow, I commit to being a patient, to needing special care, to however long it takes to recover. I submit my body, my mind, my emotions to wherever this path will lead me.

The drink is not horrible. It’s better than the barium I’ve had to drink for CT scans before. It’s just that there’s so much of it. It doesn’t feel like so much of it yet, it just looks like so much of it. I start out in little spurts of frequent sipping. I know, from experience, I have about 45 minutes until it kicks in. Quiet at first, I decide I can handle this. I keep drinking, sipping, start to chat again with my husband and the nurses. In another setting, we might have been sitting on a patio with summer cocktails. But my cocktail was something else entirely. I am worried mostly about being kept up all night by needing to run to the bathroom, but this doesn’t happen. By midnight, the worst of it is over and I am released from my duties to sleep. I accept the offer of medicine to help me sleep.

At 6am it’s time. There isn’t much to do. I take a shower, the last I know I will have for awhile. I have to use special anti-septic soap they provided me. I brush my teeth. My responsibilities come to an end, and the nurses take over. As I am rolled out of my room on the stretcher, I remember, as a child, clinging to bed rails when they came to get me for a surgery and having my hands peeled open from their iron grip. Another time, and exploratory procedure I believe, I am told by my mother, I hid under the bed, and a young intern became very frustrated at his inability to retrieve me. I considered how truthful those actions were and how much I felt like doing them right now, even as an adult.

At the doors to pre-op I am sent the rest of my way alone, with a kiss from my husband. I move to a different stretcher, one of several separated by curtains in a large unoccupied room. A nurse starts my IVs, after I pee. I always have to pee when I’m nervous. I am the only one here when the nurse leaves my side and disappears to a nearby nurse’s station I can’t see. It is unearthly quiet in this room and I feel lost in the silence. I miss the comradory that patients waiting in the same rooms for similar procedures often share. I miss having someone I know with me. I hope the first round of drugs comes soon, because I am starting to feel anxiously sick again. I consider escape again. I commit again. I wait for whoever it is next on my docket of preparations. Unexpectedly, my next visitor is a priest.

He is a short man, stocky, Latino, grey hair, maybe the age of my father. I remember the premonition my aunt had that the spirits of my grandmother and great aunt would be with me until Thursday. I hadn’t questioned this information. I just welcomed the thought of loving support. Now, as he approached, and asked if he could pray with me, I had the strong sense my grandmother had sent him to me. That he was her way of actually being here with me. He held my hand and I started to cry. He comforted me. Told me it was ok, that it was normal to be scared. He stayed with me, holding my hand and comforting me until I finished crying.

Soon after he left, 2 doctors arrived to do the epidural. I’d decided on this procedure because it sometimes reduces the amount of pain patients experience, because it deadens the nerves in one of the pain receiving signal areas of the spine. Finally pre-surgery drug cocktails arrive and I am released to the world of the unconscious.

I will spend almost 14 hours in surgery. Not all of it is the major part of the surgery. There are smaller procedures and preparations to be done before the big work can begin. And afterwards there is a 90 minute wash of chemotherapy pumped through the abdominal cavity in the hopes of attacking any remaining, but un-seeable tumor cells. These cells can be microscopic and seed throughout the entire abdominal cavity, accumulating in some places, attaching in others, and just generally spreading wherever they can take root.

The major part of the surgery is the removal of as much tumor as possible and the removal of any organs too involved with the tumor and wise to remove at this stage. This process involves the tedious, arduous, slow and painstaking examination of every abdominal cavity, surface, and organ for signs of tumor. It is the careful removal of any visible tumor, without cutting through it, which could cause it to spread further by releasing cells. Nothing within my abdomen will remain unexamined, unmoved, un-rotated, unfurled, unseen by human eyes, or untouched by human hands. At some point before the surgery, I wonder if they pay attention to the layout of things, especially things like the intestines, in order to put them back in somewhat of the same manner. Would my body know the difference? I take a picture of my belly button, because I know it may be removed because the tumor tends to attach itself there.

I am also worried about my vagina, because there is thickening along the walls which could be tumor attached to hysterectomy scar tissue. I’m worried this last hold of lower torso femininity may need to be cut down to remove tumor. I’m angry I have think about something like this. It seems so wrong. For maybe the first time in my life, I feel like my vagina is something that belongs to me, that’s mine, that has a proper place in my life. I am forced to acknowledge it’s role in my feelings about myself in intimate relationships. I am forced to acknowledge things I never considered before, that I took for granted. Who would want me? I wonder. How could I want myself? I want to wake up with my vagina intact. My belly button they can have.

Even these considerations pale next to the possibility I could wake up with a colostomy bag. They do not think this is likely, but it is one of the common results from this disease. I do not think I could cope with this. The impending life changes this implies are beyond my ability to process. But weighed against suffering and death, I suppose it is something I would choose if necessary. Thankfully, I trust my doctor enough to know, if I do wake up with a colostomy, it will be only because it was necessary to save my life. It will not be done without consideration for the impact on quality of life.

This trust has been critical for me, choosing a specialist from the small handful of 5 or so U.S. specialists for this disease. The world wide numbers were not much higher. Thankfully, the numbers are growing, maybe 15 now. That seems a lot to me, given the choices there were when I began educating myself about this disease. I trust my doctor, implicitly. He knows my fears and my concerns. He believes in quality of life. He believes in treating this as a long-term illness, and not going for the most aggressive treatment in efforts to eradicate the tumor (efforts that often result in changes in quality of life, more frequently colostomy bags, more organ removals, etc.). This is not to say those techniques do not work or not right for other people. But for me, this doctor is one of two I truly trust to make those of decisions for me.

This pending inability to speak for myself is hard for me. It is a huge concern going into surgery. During the days after surgery, I desperately wanted someone to be able to speak for me, as I would speak for myself. I wanted someone to know everything I knew and to make the same decisions I would make if I was not able to. This driving need became a battleground for my husband and I in the months before the surgery.

He was prepared to do whatever he needed to do. He was prepared to trust the doctor I’d chosen, and his medical team. I wanted everything to be examined, evaluated and judged again by someone else in addition. The doctor I trusted explicitly. The rest of the team and the nurses were strangers to me still. Not that I judged them incapable. They are a special team of people, familiar with this procedure and it’s recovery. I wanted a rock solid safety net. His willingness to do anything needed, without knowing what might be needed, was an unknown I had difficulty accepting.

His way and mine of processing information, of collecting information, of dealing with stress and difficult situations are very different. I pushed, prodded, questioned his ability, drew the trust in our relationship into a very thin line. The potential vulnerability I felt in that time, when I, the primary source of knowledge, the one intimately aware and experienced with this disease, the one of the two us who knew the details of the surgery, the risks, the common issues, the one who no longer put total faith in the medical community, I was the one who would not be able to speak. And yet, I was also the one who at risk in this time when I could not control what was being done, was might be decided, what fate might be determined for me.

So I pushed and kept pushing and kept pushing and he stood firm - he would do whatever needed to be done. And no matter what kind of true gross potential thing I came up with and threw at him as a possibility, he stayed firm in his conviction. I got as gross as I could, and he never wavered. I finally let it go, although I did not lose the scary sense of vulnerability and loss of control. I did tell him that I had no intention of dying, and that if anything went terribly wrong, I fully intended to work miracles. If needed, he should wait for that, give me time, expect it, regardless of what any doctors said.

How many days did it actually turn out to be that I was this vulnerable? 5 I think. 5 days in which I was so out of it, that I didn’t think once about being vulnerable, or out of control or unable to make a decision. Five days in which I didn’t wake up or come-to once and find myself alone. Five days he was there, or my son was there, or my brother was there. In those five days, I was watched over and tended constantly by people who loved me, and by many people who were not there in person, but were praying and loving me still.

What do I remember from intensive care? The first thing I remember is feeling something heavy across my upper chest, like thick heavy rope weighing down on me, but not enough to affect my breathing. It was tubes and lines and IVs and maybe other things I don’t know about. I remember realizing I didn’t throw up from the anesthesia. I remember thinking about how many people had complained about the NG tube, that’s needed to keep your stomach empty because your digestive track stops working in response to the intrusion and trauma of the surgery. I didn’t find that so bad. I don’t think I was awake enough to think much about it. I do remember when they removed it. Gross, but quick, would be the right words to describe that experience. There was so much talk about this in the support, it surfaced very soon as became conscious. The other primary concern was the potential for a colostomy bag. I didn’t have one. Relief. I remember getting up once in ICU, to sit in a chair for a few minutes. I remember a sponge bath.

I was in a private room. I’ve learned how rare that is, and it serves as a marker of the degree of what I went through. I remember how small the room was, how there were two walls with windows, covered by curtains. I remember I could see into the hallway when the curtains were open, and see the door into intensive care. People had to be let in by a nurse or staff member. I remember my family coming and going during non-visiting hours. They were allowed to stay with me around the clock, often 2 of them there at a time, my husband there each day, my son there the first 3 days, and then my brother. I remember waking up and seeing them sleeping and thinking how tired they must be. I remember the day my son left, and how he didn’t want to go home yet. I remember some of the tubes and lines being removed, gradually, one by one, day by day - not so much specifics, but a gradual coming to be more and more awake and aware and a sense of being relieved of things that felt restrictive. I don’t remember pain. I don’t remember time.

Finally on Saturday, I went back to a special unit private room to finish my hospital stay. I remember how fresh and free and clear and normal the room seemed, with it’s big window, natural light, bathroom, TV, and my things - my things. All those things I spent so much time preparing, so I wouldn’t be bored. And now I couldn’t give one hoot about them, couldn’t deal with doing them, had no interest whatsoever.

They take me, that same day I believe, in a wheelchair down to x-ray for a chest x-ray. They have to make sure my lungs stay clear. I have one of those common post-surgery breathing practice apparatuses that you blow into and have to keep a ball floating at a certain level for a certain period of time. You repeat this exercise multiple times a day. It helps your lungs to recover from the anesthesia. X-rays are done periodically to make sure everything still looks clear.

Waiting for my first chest x-ray, I find myself left alone in the hallway outside of an x-ray room, cold, feeling queasy, dizzy, and already feeling done with sitting up, and more than ready to lay down. I remember seeing other people in different hospitals left sitting like this, waiting. It always seemed thoughtless. Now I knew how thoughtless it felt.

It’s been about 15 minutes since we started on this trip. Between dealing with open gown backs, slippers, IVs and the like, it takes a few minutes just to get out of the room. I wait a few more minutes and the x-ray technician comes out to get me. That’s when I find out they expect me stand up for this x-ray. All I can think is how that’s not even funny. They must be kidding, but they are not. Somehow I manage to stand long enough and gladly collapse back in my chair. I wait a few minutes, again, for someone to come and return me to my room.

I start to ask questions about the surgery. Anything I’ve been told is fuzzy. I find out my spleen, gallbladder, and belly button were removed. My vagina is safe. I haven’t looked at my incision yet, although by this time I could. I don’t want to look. I don’t want to know. I do learn all of my closures, internal and external, were done with stitches, not staples. Someday, maybe I will ask how many.

That afternoon, the physical therapy (PT) lady showed up and sent me walking down the hall. I was to walk twice a day, trying to increase the time and distance each time. The next day, she brought me down to the PT exercise room and had me walk up and down some wooden stairs and then do some pedaling on a recumbent bike. I came to call her the PT Nazi, because I really didn’t want to get up and do those things and she came to represent the fact that I needed to. I felt I should have more time to rest. But the danger in resting without moving enough is that blood clots are more likely to form, and your body needs movement to help it recuperate. So I walked, I climbed stairs, I bicycled, grudgingly, doing just what was required, no more, but I did it.

Monday or Tuesday I start to get something that looks a little more like food and a little less like liquid. Popsicles, broth, and tea have been the staples of my diet. That and an IV with nutrition. I still have that IV, and one in my neck that goes into a bigger vein, in case they need to get something into my system quickly. I still have scars on my neck from that IV. They look like vampire bites.

Wednesday, mid-morning, I decide I MUST have some real food to settle my stomach. I can feel the acid building up in there because my stomach is empty of solid food. I want oatmeal. I ask for oatmeal. I have to wait for the doctor’s ok for oatmeal. I think how I know my own body. I become obsessed with the need for oatmeal.

They tell me I am being released that day. I am still waiting for oatmeal. We are finished with our paperwork before the oatmeal arrives. I know it is coming, and I refuse to leave until I get it. We wait - another half hour, and finally it arrives. When I finish, which takes little time, we leave for the hotel.

I am released from the hospital, but must spend a couple of days in a local hotel before heading home. The hotel is only a block away from the hospital, so the trip is short. It feels wonderful to be free. We take my walks outside - around the parking lot once. I don’t want to do more. I try to eat little microwave fish and rice meals, and the few bites I can manage taste good. I refuse to drink Ensure, although it is recommended. It makes me want to throw up and I am constantly battling that feeling with out the extra incentive. I finally look at my incision. I take showers. I take medicine. I wait.

My tolerance for external stimulation is more apparent in the hotel room. I can’t stand the aggressive sounds of the normal TV shows my husband watches: no fighting, no raucous comedy shows, no aggressive music or events. They are too intrusive and I feel super sensitive. I want quiet. I want rest. I want to sleep a lot. I want the nausea to go away. I want to go home, but I do not feel ready to travel. I want this to be over. I wait to feel better.

On Friday, I have my follow-up appointment and I am given the ok to go home. Our place tickets are for Monday. My husband wants to leave sooner. I am afraid to travel. I am afraid of feeling so sick to my stomach and not being able to lay down. I’m afraid of not having immediate access to a bathroom. I’m afraid of how long a trip it will be to endure. He is like a caged animal at this point - ICU, hospital room, hotel room. I concede and we leave for home on Sunday.

As we leave the hotel, the people who work there chat with us. It’s as if they know me, but I don’t really recognize them. He does. They know my story through him. I know the people at the hotel are used to people at hospital staying there. I think about the different life he’s been leading through all of this. Two parallel paths. Two totally different experiences. I can’t talk much. I don’t have much to say. But I can see how supportive and caring these people are.

I am dressed as comfortably as possible: sweat pants, tank top, light zip up sweat shirt. I can’t wear a bra yet because it would rub on the top of the incision, but I’m ok with that because I have my sweat shirt. I can see permanent spots on my clean clothes where I have bled or leaked through bandages. I have extra bandages with me in case that happens in the trip, ugh. I have water and crackers.

We take the shuttle to the airport. I carry nothing this time. Do nothing. Our trip is broken into segments by the distance between locations and how far I might have to walk. We have requested wheelchairs at the critical points, the check-in counter, changing planes, and when we arrive at our home airport. As I sit in the wheelchair waiting, I wonder what people think when they look at me. I know how pale and tired I look. I know the way I am dressed. I know the things I have wondered and felt when I saw someone, like me, sitting, like this, waiting. I am too focused on making it through this trip to think about anything long. Determination is my focus. Getting home my motivation. Enduring my goal.

I have to walk through the security check. In the process, they make me remove my sweatshirt, because it zips like a jacket. Now I feel utterly exposed in a tank top, no bra, sickly, and struggling to get through the process of getting to the gate. For some reason, they need to use the wand on me. I don’t even remember why. Maybe I didn’t take my shoes off. So I sit, exposed like that, waiting, in a plastic chair in between the exit area of the 2 security lines and x-ray machines. I wonder what’s wrong with these people? Do I really look like a threat? I can’t even maintain annoyance long, so I wait. The process really doesn’t take that long. We regroup. He gathers everything, and me, and we make it to the gate.

I don’t remember much about the rest of the trip, except waiting. Waiting for wheelchairs to show up where they were supposed to be. Waiting to change planes. Waiting for my husband to come back with something I might be able to eat. Waiting to get home. There is little impatience in this waiting. There is too much going on inside my body to desire much activity. There is no desire to entertain myself, no desire to think. There is just time that passes between the things that need to be done.

I do not yet know, that this will become the central sense of my existence for some time to come. I am still waiting and expecting to feel better any time now. They tell me that recovery often seems to be slow and then an improvement will appear suddenly. I had seen this happen already. I was waiting for it to keep happening. It would turn out to be much slower than I expected. I expected weeks. It turned out to be months. Even if I had known, I could not have prepared for this. I would not have known how, would not have understood what it would be like.

We made it home. It was wonderful to be there. But I did not step back into my world as I knew it. My home was there. My things were there. I was somewhere entirely different. I was fortunate that my mother was able to come and stay with us for a few weeks to care for me. I expected I would need her a week, maybe 2 if I stretched it. I needed 3 weeks. My days were repetitive, slow, and draining.

Without realizing it, I created a schedule of little markers of achievement to get through the day. When I woke up I took the first round of medicine. I took a shower, then laid down for a few minutes to rest before getting up the energy and motivation to get dressed. Standing was hard for me, not because it was painful, but because I felt so drained and exhausted. I dressed in big soft comfy clothes and then made my way to the couch. I ate little bites, maybe 5 on a good day, of breakfast, things like toast, scrambled eggs, and oatmeal. I watched Ellen, then The Tony Danza show. Often, I felt like throwing up, but I wasn’t supposed to because it wasn’t a good sign, I had often just taken medication or I had often just eaten something, which I desperately needed because there was so little of it. I took a morning nap. I tried to sleep as long as I could to help pass time, but I never slept more than an hour or two.

Lunch was another struggle with required eating that I just didn’t want to do. I took medicine on schedule. I watched StarGate or old StarTrek repeats until the afternoon-or something else that didn‘t make me think. I walked outside in the driveway with my mother and the dog, slowly back and forth, watching the clock. I counted the laps so I could occupy myself with counting rather than clock watching. It was cold, snowy, and windy on those walks. I hated them. I started to walk laps in our small house instead. Twice a day I did this. Twice I day I hated it. I started to cut them short, and then for a while I stopped walking in rebellion. My husband started nagging me about walking. When we went to the store he parked at the farthest end of the parking lot, so I‘d have to walk farther. After a couple of weeks, I started motivating myself to walk again.

In the evening, I tried to eat a little bit of regular dinner. I couldn’t look more food than I could eat on my plate, because it made me sick to my stomach. I sent dinner back to the kitchen many times with a request to take food off my plate. I stayed up, watching more TV until 8 or 9 o’clock. If I went to bed too early, I woke up too early, and that was worse because the house was too quiet and no one else was up. When I got into bed each night, I felt like I had accomplished something just by making it through the day. It was always a welcome release to go to bed at night, free from a need to function, if only minimally, for an entire day.

I never had much severe pain, more discomfort. Not being able to eat and nausea were my greatest difficulties. Between the pre-surgery problems eating, the surgery itself, and not being able to eat afterwards, I lost 40 pounds. I was hounded by weakness, fatigue, and exhaustion, contributed to by lack of sustenance. I never could bring myself to drink Ensure, a sure throw-up inducer, so as things gradually got better, I started to focus on high calorie foods. I started making smoothies from protein powder, sorbet and fruit. I drank whole milk and fruit juice. I ate yogurt and cottage cheese. I ate eggs and toast. This doesn’t sound like much, but it was for me.

I lived almost entirely on a physical plane. I had little energy or motivation for the simplest of thoughts and emotions. I was my body. My body was me. We were bonded together completely within the realm of recovery. There was almost no more. My days passed as I described them above, anything extra, phone calls, questions, decisions, trips to the store for medications, all took an effort of will to complete.

I wanted to want more. I wanted to want to talk to people. I wanted to want to be in part of a more normal life. I wanted to want more than what I was doing. But I just didn’t. If I drew a picture of myself in that time, I would be prone, flat, thin, deflated, an empty shell, a paper doll. This is how I felt. I think of it as the time my world being no bigger than my skin.

This state lasted for some time. After about 6 weeks, I was walking a little bit more, lasting a little bit longer. I was eating a little more, still nothing near normal. Showering was easier. I varied my TV shows to include more interesting material. I didn’t sleep as much during the day. I still collapsed gratefully into bed about 9pm. I still struggled with eating. I still struggled with nausea, but the more I was able to eat, the better the nausea got. I felt like I was trapped in a cycle of not being able to eat much because I was nauseous, and being nauseous because I wasn’t able to eat much.

Gradually, gradually, I improved. At 8 weeks, my brother invited me to his house in D.C. where it was warmer and a little more spring like. I’d been at home 2 months now. I was eager for a change of scenery. I waffled unsure if I could make the trip, if I wanted to be away from home with the bathroom type problems I was still having. I hedged and didn’t decide. I had trouble making decisions. I cried a lot around this time. I was unsure of myself, of my ability to navigate life again. Was I ready? I wanted to be, but my body still felt limited.

I was scheduled to be out of work for 12 weeks. At 10 weeks, I knew I wasn’t ready to go back to work. I had no idea how I would deal with my special food needs, my continuing fatigue, and my continuing bathroom issues. I extended my leave by 2 weeks.

I started to make little trips to increase my endurance. For these trips I started to wear real pants, jeans even. Most of my pants were very loose on my by that time, so that helped. I visited a few friends. I went to doctor appointments. I shopped a little. I went to places I could easily sit down and rest if I needed to, which I did frequently and for long periods of time. I felt guilty, like I was out doing fun things when I was supposed to be sick, like I was playing hooky. The reality was that the only way I was going to build my endurance was to be out doing more enduring things. I decided to go to my brother’s.

It was there, in mid-April, that I ate my first whole sandwich at one sitting. It took 11 weeks, almost 3 months, to work my way up to a whole basic BLT on bread. I remember looking at my empty plate and thinking how amazing it was and how long it had been. Much better than the dinner out I’d tried a few weeks ago, when I only managed to eat about a tenth of my meal.

To this day, a year and half later, I don’t eat anywhere near as much food as I used to before I got sick. Between the before and after surgery eating problems, I developed a whole new perspective on volume of food. To put it simply, I am quite aghast at how much food some people eat at one sitting. In some ways, it feels obscene. I never noticed how bad it is, until I was somewhere very far away from what our culture considers normal. I do have days I can pack it away, but those days continue to be few and far between. I’m a BLT on bread kind of girl now, rather than a Dagwood. I think I am forever changed in this way.

I made the trip to my brother’s ok. The warm weather and change of scenery were good, as I suspected they would be. But I found I really hadn’t been ready to leave the comfort of home for a whole week. I enjoyed my visit. It was good for endurance too. We did a lot of walking. But I was ready to go home when it was time.

Almost time to go back to work. I’m still not sure I’m ready, but I feel ready to try. I dig for some clothes that are not such sloppy soft sacks. I realize I hardly wore most of my normal winter clothes. I have the sense that I missed almost an entire season.

More ominous than returning to work is the CT scan looming up 2 weeks out. For this scan I have to drink 2 liters of barium. Aside from the fact I don’t know how I’ll handle the thick chalky disgusting stuff, there is the shear volume of 2 liters needing to be drunk in 90 minutes. The idea itself makes me feel like throwing up. I’m horrified and terrified at the idea of having to even try. I finally ask to have the test pushed out. I get the nod for a 2 or 3 week postponement. I take the 3 weeks.

I start work slowly, able to adjust my schedule and my workload as I need to. I manage with food and bathroom, both still improving. After 2 weeks of being tired, but ok, I start to feel much better and my energy really starts to come back. I start to feel somewhat normal for the first time in 3 months and I am so glad to have that sense of myself again. I realize how stark my internal world has been. I am still at a loss for words to explain the void of self, of emotion, of almost everything normal, in that time. Raw being, emotional flatness, lack of thought, all come somewhere close. It’s as if parts of my being, as I knew, them shut down. What was left related entirely to body and entirely to survival. The basic basic basics of life, is what my life centered on. To be back from that, to come back from that, was beautiful.

Despite this wonderful return of living and beauty, I still had the CT Scan to deal with. Anxiety welled up every time I thought about it. I made it through the test, but not without getting sick and throwing up. I tried to talk myself down from the anxiety while I was at the test. I tried to talk myself through little sips at a time, but it didn’t work. My body was too involved in the whole recovery process and knowing what was good and not good, to be fooled by this kind of psychological game. Maybe it was self-fulfilling. Either way, I survived, and I felt the last step had been completed. All I had to do now was pace myself.

In the first several weeks of work, I was tired by the end of the day. When I got home I rested. This was when I turned back to journaling. My writing focused on what I wanted to do with my life, now that I felt like I had it back, not only from surgery, but hopefully from disease. I still struggled with the idea that the disease could come back at any time and might cut my life short. I returned to the only place I could find to live with any kind of acceptance of this unknown. That place was in the moment.

If my life might be short, I intended to live with attention, with intention, and focus on the most important things to me. A lot of my writing was about this. Lists of things I wanted to do, things I wanted to be, things I wanted to learn, places I wanted to go. I started doing, as doing allowed. I breathed life in big gulps, letting it fill every cell of my being, every dark corner, every dry flat place I knew inside me. This was the beginning of one of the most amazing, full, rewarding years of adventure and doing that I’ve ever had. I found true fearlessness that year. But that is the next story.