Fearlessness and Recurrence

In May of 2005, I was finally feeling myself again, after a long slow recovery from surgery in early February. Four months it took me to come back to myself. And before that, how long since I’d felt free from pain or illness? Years. In the year before the surgery, the doctor appointments, the searching for information on this rare disease, the tests, the difficulty eating, the wondering, the waiting, the worrying. And before that, the first surgery, where they discovered this… this thing. And even before that, 2 years of what had appeared to be rheumatoid arthritis, but now was in question as to the true source. Was it my body reacting to a yet undiscovered illness? Altogether about four years of my life.

I felt like I’d lost most of those four years. My counselor was concerned when I said this, but it was, and remains, the honest truth. I am supposed to be able to continue to find the meaning and see the value of what I am still able to do, of time with the people I love, and in myself, whatever my limitations. This is not my problem. I can see all of that, and I do value it. It does bring meaning. I can discern between important and optional. But I continue to be able to see LIFE, people, activities, curiosities, sunsets, snowstorms, now separate and apart from me. I am somewhere else in a reduced life, filtering everything through the veil of disease, dis-ease, and inability to participate. It is perhaps the worst of this whole situation for me, being on the fringes, incapacitated, cheated out of the full taste of life, living scared. The number of hours I’d spent laying, resting, recovering, out of necessity, were astounding. The number of times I’d fought back pain or sickness in order to participate was staggering.

In the recovery from surgery, I became a purely physical being, so concentrated was the effort my body had to make. No energy for thought. No energy for emotion. But now, now I was back. Now I was hopeful. The surgery was my best hope, not for cure, but for time. If time was all I had, I was going to use it. I began to plan, and more importantly, I began to do.

I felt healthy and strong. I felt like grace, moving without pain, able to lift, able to eat, able to think and feel - all the things I hadn’t been able to do for so long. I felt magnificently alive and extremely thirsty for life, especially life without illness. Because I could, I walked away from being a sick person. Because I didn’t know how long I could walk away for, I ran.

Even so, for awhile, I was haunted by the unknowns. Anxiety tried to creep in and I was at a bit of a loss trying to banish it. Then one day I realized this kind of thinking was stealing time from me. Fear, anxiety, and worry were all filling space, precious space, that I wanted for other things, that I wanted for LIFE. Inside, I shifted. I moved out and away from where I’d been co-existing with them. I felt, truly, like a butterfly coming out a cocoon and finding I had wings. I felt free, in a way I’d never experienced freedom before.

It wasn’t just worry about illness that dropped away- it was self-doubt, inconsequential concerns for what others would think, wanting to be sure of myself before acting. I felt light, airy, joyful, impish even. The contrast was stark. I wondered where I’d learned to be so heavy and concerned. This felt like childhood wonder, awe, curiosity, and self-confidence. I drank deeply.

I tried new things I’d been hesitant about. Alone one day, I rode my husband’s bigger motorcycle, loved it, and traded my 800cc bike for a big 1600 cruiser. I learned to drive the truck with the trailer on the back, and how to back it up. I learned how to load my motorcycle into the trailer, and I backed it up into the shop parking lot during the morning rush hour. Competent. I was competent or competently learning - not unable, unskilled, or leery.

I planned a summer vacation motorcycling in the Great Smoke Mountains, much of our trip on the Blue Ridge Parkway. We made our way into Virginia, Tennessee, North Carolina, and South Carolina. It was nothing short of amazing. We stopped at the Joyce Kilmer forest and walked among huge poplar trees. We rode the Dragon’s tail, a very curvy road famous for motorcycle riding. We explored shops, aqua-ducts, museums, and local restaurants along the way. We rode past miles and miles of expansive mountain views: foggy, clear, sunlit, dark, cold, hot, wet, dry. I soaked it in.

In this part of the country, the footprint of humans is less obtrusive. Houses seem to sit on the edge of woods and forest, looking as if they are allowed by nature to exist there temporarily. Trees grow up and around, bushes grow up, rivers run. There are towns, people, strip malls, gas stations, and other human evidence, as there is in most places. But outside of that, the Great Smokey Mountain National Park is Nature herself, and sure of her rightful place.

Riding along and up and around mountains and valleys, surrounded by old tress, protected lands, wildness, under a southern summer sky, I felt small. Not inconsequential, just a small part of something much bigger than me, much stronger than me, much more enduring than me. I realized how big I had become in my own life. How much energy it had taken to be sick, to stay on top of being sick, to cope, to struggle, to do what needed to be done, to recover, to nurse, to contain, to cleanse, to heal. Being small was a release from all that. And in this grand magnificent place, I could drop all that without making a ripple and without fear of losing my place. Where that bigness had been, nature swept in and filled the void, like a baptism releasing me from unintentional sins. I found calm, contentment, daring, strength, self-assuredness. I found fearlessness.

The year continued to unfold in one fulfilling doing after another. We rode our motorcycles to the top of 3 of the highest mountains east of the Mississippi. I decided to go back to college for my Master’s degree. In August, I started school. In September my brother and his wife had their first baby. That same month my Mother and I took a week long trip to check out Delaware where she thought she might like to retire, and to see the new baby. In December, I went to Mississippi to volunteer for a week with Habitat for Humanity.

By the end of the year, I was tired. Looking back I realized I’d been away from home at least once every single month, either for fun or work. It had been great, but I needed time to rest. During the holidays and much of January I relaxed. I think of that time as a time of mind-mush, doing, but nothing of any consequence or great exertion. I was wonderfully lazy and content to just be in my own space for awhile.

As year end self-assessment thoughts crept into my head, I found myself at a loss for what was coming next. I realized I’d been so focused in the moments happening that my thoughts hadn’t gone out much beyond the new year. With the slower nature of my winter life, what, besides continuing school was next? That should have been enough, but I still wanted to take life in. I wanted time to count. But I new, I needed a bit of a break.

Instead of a break, as 2006 rolled in, my illness was in my face everywhere I turned. My insurance company changed. My specialist was now not only out-of-network, but this company had no out-of-network coverage. I spent hours on the phone with a case manager working out transitional coverage and potential new doctors that were in-network. I had a CT Scan, that showed slow, but continued growth. My blood markers continued to trend upwards in leaps and bound, indicating that the tumor might be becoming more active. I had a new pain in my abdomen. I had to reorder all my medications. I had a lot of doctor appointments, including a 1 year follow-up with the specialist on the exact anniversary of my surgery. The new school semester started between my CT scan and the appointment with the specialist.

At that appointment with the specialist, he told me the tumor was more active than they had hoped it would be after the surgery. The surgery - my saving grace. All that suffering, bought me a year. A quarter of my life, for a three/quarters gain. How far would those kind of odds take me, out into my life, all that life I still wanted to live? He recommended chemotherapy - a pill form, that has proved effective against this tumor for some people. One that many people were able to tolerate fairly well, without too many side effects, often even for longer periods of time. No way to know if it would work for me until I tried it.

I asked at that visit if what I have is considered cancer. Two years later, and I didn’t know the answer to the question. The cells weren’t cancerous, that I knew, and that had been enough. My reason for wanting to know was in order to get more appointments approved with the new insurance company under the transition umbrella.

I learned that technically, yes, this is cancer, although the cells are not cancerous. The basics of it are that the tumor is composed of normal GI cells growing where they shouldn’t be. I also learned that because it was growing, it was Class IV. Helpful for insurance and transition. What it meant to me? I still hold that a bit distant - cancer, but not as people normally think about it. Cancer, but not. The distinction remains an important one to me, even if it only a distinction of semantics.

I swallowed all those words, swallowed my emotions, swallowed my time, and waited.

I was to work with my local oncologist for chemotherapy treatment. It wasn’t long until my appointment. I buried myself in school work until then. He wanted me to take two chemo drugs, rather than just the pill form. He told me there’s a perception that the pill form isn’t as bad as injected chemo, but that it could be - it was still chemo. He told me the two drugs worked together. That because there were 2 drugs, they could use less of each one. He told me the side effects for each were different, so hopefully the combination wouldn’t be as bad as if I took more of just one drug. I didn’t want to take 2 drugs. I questioned the need for two. The specialist had only mentioned one. The oncologist won out. Chemotherapy was his specialty, and he showered me with reasoning and new research with these new drugs.

I had options for one of the drugs. I could come in more frequently, receive the drug on a pump I’d have to wear for a couple of days, come back in to have it removed. I could come in less frequently, get the drug intravenously, but it would be higher doses and therefore maybe more side-effects. I opted for the IV, deciding it would less disruptive to my everyday life, fewer trips to the hospital, fewer times I would have to think about it. Even more so, I couldn’t stand the idea of wearing a pump round the clock. I could always switch later if the side effects were too much.

It was decided. I would do 3 months of treatment, 4 cycles, of Xeloda pills, and Oxaliplatin IV. The drugs were given in coordinated cycles. A cycle lasted 3 weeks. A cycle went like this: Day one, Monday, blood work, oncologist appointment for an OK to go ahead with treatment, IV of strong 4 day anti-nausea medicine, IV of Oxaliplatin, start Xeloda pills. Day 4, Thursday, marked as a likely physical crash day. Two weeks on the Xeloda pills (4 big horse pills, taken 2 at a time, twice a day). One week no chemo. Times 4.

He asked me when I would be ready to start. The irony of the question, with its well intention, rang through my mind. How long before I give up another 3 months of my life? The effects would be cumulative, side effects likely to get worse as time went on. I could bargain for a month, I knew. The tumor was slow growing and the oncologist was not pushing me to start right away. I decided not to wait. The sooner I started, the sooner I would be done, and I wanted my summer. We decided I would start in the beginning of March. That would give me about two weeks to prepare.

I buried myself in school again. I did a little research on the internet about the drugs. I knew they were chemo drugs commonly used for this disease. I smoked cigarettes, a habit I’d quit for two years. I kept what I felt at bay, and I knew it, because I didn’t want to think about it. I didn’t want sickness in my face. I wanted my life, and here I was on the edge of losing it again. I pushed all that aside and I kept busy.

I didn’t know how I would react to the chemo. I didn’t know if it would work. I didn’t know how sick I would be, or if I would be sick. I did know I wasn’t likely to lose my hair. At least one thing not to worry about. Sometimes I choked on what I felt, but I refused to feel it. I refused go back to being scared. I wanted to be fearless. I refused to give room to the anxiety that clawed at me. I choked on it. I sat on it. I squished it. I buried it. I put it out there as an unknown, and left room only for what I did know. I buried myself in school and I waited to know the reality.

Chemotherapy is given in a long room split into 4 sections. Each section has four patient chairs in it. There are pillows, blankets, a TV for each chair, snacks, and one nurse for each section of four chairs. The first visit, we had a one-on-one information session about the drugs I was receiving. I left with a white binder with all the pamphlets, information and contact information I needed. I even got a branded pill case for the Xeloda. I hate that binder. I hate that pill case. I kept it because I needed it, but I tucked it away where I didn’t have to see it, where no one else had to see it. I resented that I had to have something like that in my house. I resented that I needed to know side effects for chemo and I resented that I entered the nurse’s direct phone number into my cell phone. I wanted to know because I needed to. I didn’t want to have to know, but that was irrelevant.

At first it wasn’t so bad. I was glad I didn’t feel as ill as some of the people looked who were there at the same time getting chemo, or other treatment drugs. I snacked. I brought things to do while I was there. I stayed positive. I could do this. All in all it took 6 hours that first day. A long tired day.

The side effects of the Oxaliplatin had started by the time my husband and I left the hospital. I knew to cover my face with a scarf to avoid the cold air causing a sense of not being able to breathe. I knew to wear gloves so the cold didn’t get to my hands. I knew not to drink anything cold or touch anything cold.

By day two, I couldn’t drink anything colder than a decent warm room temperature. I would forget and wash my hands in cool sink water - shaking them until the painful tingling stopped. I wore slippers all the time, because the cold slate in the kitchen made my feet prickle. I took things out of the refrigerator, quickly, with my hand tucked into the end of my sleeve like an oven mitt. I covered my face and my head when I went outside.

Other than this, the first cycle wasn’t too bad. On day four, I was exhausted, but I worked a full day and rested when I got home. I had medicine for nausea, which I watched for like a hawk. I ate yogurt to help my digestive track, which gets upset by the chemo drugs. I rested. I worked. I did school work.

Cycle two, was worse, as predicted. Food started to not taste good. I felt sick and not just tired on day 4. I was more tired on more days. I was more sensitive to cold than before. The IV itself was irritating, cold, and made my arm feel stiff. I was agitated, tired, and feeling generally not well. Work became trying. School became trying. Frustration and anxiety started to creep out.

As I got into the 5th week, I knew I wasn’t going to make it doing everything I was trying to do. I struggled over the need to give something up. School seemed the obvious choice, but I so much wanted to keep that part of my life. Work, I couldn’t give up. Extra activities I also balked at giving up. I still wanted it all, but I was losing my grip on each of them, little by little. Finally I decided to ask for help from each of them.

My manager was supportive. I planned to be out on day 4, which turned into day 4 & 5 in the last two cycles. If I was exhausted or didn’t feel well on other days, I stayed home instead of pushing. I planned to take some vacation days off to help me get my school work done. My advisor at school let me rearrange my packets to work around chemo days, and was also very supportive. I cut out most of the extra activities, although I did take on a few extra, that I felt I needed to do, and later decided I shouldn’t have.

I had a few days with bad abdominal pains that seemed to happen at the same point in the cycle. Once they had me stop taking the Xeloda early. The other time, they told me to keep taking it. I felt like they were traitors that second time. I wanted them to pull me off it.

It was actually harder to take the pills than it was to go and get the IV. Someone went with me each day I had the IV. I had to give the pills to myself. I could stop them. My body screamed for me not to take them. They were poison. I knew they were poison. My body knew they were poison. I felt poisoned. All I had to so was stop taking those medications and it would stop. The temptation was tremendous.

During cycle 3, of 4, I seriously considered stopping the chemo. I talked to another patient with the same disease who I knew was not going in for doctor visits and not taking medication, because he decided not to. I talked to people I knew. They all said I should I finish. I kept looking for someone who would agree with me. I had an intuition that my brother would tell me the right thing to do, so I called him. Without knowing of my secret mission, he told me to stick it out, that I could do it. Despondent, but resigned to finish, I hung up the phone.

The last cycle, was the worst. I counted days until it was over. I gagged when I took pills out of that pill box as saw how many were left. I slept a lot. I worked less. I threw-up. I waited. I plodded. I worked on school. I did as I could do. I rested. I ate what little I could stomach during that time - melon, yogurt, toast. I cried. I waited for it to be over.

All this time, what I had been suppressing came well into light. I felt disconnected from myself, my husband, my life. I had that same sense of simply trying to make it through each day after day after day, similar to my surgery recovery. I hated it. I hated losing my life again. I hated that someone might tell me again that I needed to do more chemo, that I needed more surgery, that I was sick, that I had to do something else that contradicted everything about my life that made it worth living.

Was this true? Would I give up living longer in order to live more fully? It was an easy question to ask in the angst of suffering. It seemed an easy question to answer, as everything I thought I’d left behind at the beginning of the summer welled up again with fierce force: fear, anxiety, trouble sleeping, chemo a constant reminder that I was not only sick, but sick in trying to be better.

There was no definite end to this trial. It could happen over and over and over. The chemo, which I still didn’t know if it was even working, would not get rid of the tumor. Because the cells are normal, they are attacked in the same way normal cells are. Chemo works when cells divide. Cancer cells divide more quickly than most normal cells, so they get a stronger dose of the bad drugs. My tumor cells were normal, just in the wrong place. And if this didn’t work? Other chemo drugs? More surgery? I didn’t know. I couldn’t think about it. I just had to do.

I finished chemo, every last nasty pill. I finished the school semester. I went back to work regularly. I started to feel better. I started to eat normal food. I started to lose the tingling sensations in my hands, although my feet would continue to experience neuroplasia, I think it is called - in a nut shell, over-sensitive nerves resulting in frequent tingling. My mouth and teeth also continued to be sensitive to cold for a couple of months, but all gradually lessening.

I had another CT Scan and the tumor had stopped growing. No growth for the first time ever since they found it. No growth. That means the chemotherapy worked. The chemotherapy bought me time. Way back in the first discussions about chemotherapy, I’d said I would not do chemo in the summer. The doctor had agreed without even knowing the results of this first round. Again, the grace of a slow growing disease. The news was good. Another weapon in my arsenal. Still, I already knew I would have to give serious thought before I would do chemotherapy again.

There were few emotions around this good news. It is one of the ways I knew how detached I had become from my future. Yes, it was wonderful news. Yes, it was one more option. Did it give me hope? What I sensed instead was reprieve. I had my summer and I intended to keep it.

I anticipated a summer like the one before. I thought I would launch back into life, into fearlessness, into relaxed and attentive living. That is not how it went. Instead I was restless, unsatisfied, uneasy. I did nothing big or adventurous. I was crabby, angry, and resentful. I wanted, what? I didn’t know what I wanted. The fears I had been suppressing, the reality of being sick, the emotions I pushed down, seeped into my being, into the edges of my life, into my dreams, into my person. I began to really see how much I had been avoiding dealing with how I really felt. At the same time, I didn’t know how I really felt.

This was the crux of my summer. There were some good times, but the summer seemed to be over before it started. There were no big motorcycle rides. When we did ride, I wanted to be home puttering. When I was home puttering, I wanted to have everything done, and not a long list. When I saw friends and family, I was distracted by all the things I wanted to get done. Instead of being overloaded with dealing with chemo, school, and work, I overloaded myself with the things I wanted to do.

When school started in early August, I was unsure of myself, where I was headed, what I was studying, and what I was studying it for. The personal aspects of my studies were bogged down in hazy thinking and deeply laced with emotion. I couldn’t sort myself out from my school work. But I couldn’t do my school work, without me in it. I resigned myself to the fact that I might have to do an extra semester, put something together for my studies, and pointed myself forward. It wasn’t easy, but it worked.

I had another CT scan in August. The well-intentioned intern at the results appointment came in and said she could see I hadn’t wanted to do chemo over the summer. Was I ready to start up again? My jaw dropped. My heart dropped into my stomach. I hadn’t even heard the scan results yet. Were they bad? Had she seen them? I constructed my answer carefully. I wanted to see the results of the scan and get the opinion of the specialist before I took further action. It was then the doctor came in and they went to look at my results. She hadn’t seen them yet. She’d made an assumption from the little bit the doctor had told her before she saw me. Still my managed calm, imperative for all appointments of this nature, was shattered. I could feel the anxiety creeping in. How close by it seemed to be.

As it turned out, the results were very good news - another scan with no growth. He had said we might see the affects of the chemo for 3 months. I postponed my appointment with the specialist. Another 3 months of reprieve.

I spent that time working on all the welling and unsettled emotions I’d been suppressing, finding ways to give them voice, putting into words what my experience has been. I’ve found many ways I’ve dissociated from my experience, and I am trying to put myself back together again. Mostly I have been trying to find myself again, trying to understand who I am now after all this has come to pass and with all that may yet come to be. This is its own story.

Some days it is hard to be so honest with myself. Some days it seems I live my life in 3 month chunks, scan to scan, appointment to appointment, unknown to unknown. It is the future that is the biggest unknown for me and a place I tread lightly, if at all. It is part of what I am trying to reconnect with. It is part of the story I still need to write.