Flexing my Hope muscle

I am not an optimistic person by nature. I am more of a facts and details person. So when I was told, “You have NSCLC adenocarcinoma, Lung Cancer,” I had to find out all I could find. Thus, began my search for the facts. A few weeks later, I found out my cancer was at stage 4. I could not be cured, but they would treat me and try to give me as much time as possible. The statistics were stacked against me. I kept a smile on my face and began chemotherapy. I got weaker and it became a big accomplishment to make it from the main floor of the Cancer Treatment Center, up the elevator and down the long hall to the clinic. Eventually it became a feat to make it from the bedroom to the bathroom and at the Cancer Center I needed a wheel chair for any trips for CT scans, x-rays or MRI’s. My smile was fading, my hair was gone and my friends and family still told me to stay positive and keep up my Hope.

I could still smile on the outside, but inside I wanted to scream at them and say, “Do you know what Stage 4 means? Have you ever had chemotherapy or cancer?” Not wanting to be difficult or ungrateful I kept my feelings to myself. Others often seemed uncomfortable when I expressed what I was actually feeling. Hope seemed distant and impossible to cling on to.

I came home just before the Thanksgiving holiday. My tumors were not smaller, but they had been stabilized. My oncologist felt it was safe for me to wait 90 days to try another treatment. He gave me the choice. It felt like a stay of execution.  My last holiday season with my family. So, I reached deep down and pulled up a tiny crumb of Hope. I could barely stand, but managed to mix up and bake gingerbread cookies for my grandson to help me decorate. My strength was so low I could barely stir the dough, but I pushed myself and did it anyway. We had to sit at the table to decorate cookies because it was too painful to stand. I prepared a Christmas prime rib dinner that I could hardly eat.

I made it through the holidays and kept that smile on my face. It was hard. I started getting sicker, my cancer was growing again. My oncologist started me on a new treatment. I was his second patient to use this genetically targeted therapy. It was a twice a day pill, so I could stay home and only went to the Cancer Center every 3 months. The treatment began to work. My collapsed left lung began to open and fill with air. I began to get stronger. I could drive a car, I could cook a meal, and I could carry my groceries in from the car. This did not happen all in one day. It took months to strengthen the muscles that had become so weak. This was not a cure, but I could now live my life.

Then there was still the issue of Hope.  My sisters made me aware of LUNGevity Foundation and their LCSC. I found other lung cancer survivors and caregivers there, online, who understood what hopelessness felt like. Yet they now seemed to have Hope. I was a bit reluctant at first, but it seemed to be working for these people. They seemed to be genuine and I soon made friends. I kept flexing that Hope muscle. It was pretty weak at first. I then began to feel better. My mind and emotions were getting stronger just as my physical muscles had done. I have grown and become stronger in so many ways. I did not do it alone. I did not do it in one day. My Hope muscle is helping me push through each day, through each decision. I can experience joy and happiness in my life with cancer. There is still work to be done, but now I feel I have the strength to do it. The strength to keep trying and I have the power of Hope to help me do it.

The Road Not Taken

I was thinking this weekend, and discussed with my husband, how it seems that life has just gone on as usual for the rest of the world. I know there are many others like me, who deal with life-altering medical conditions.  It seems as though many of my friends and family have taken a direction that I will not be able to travel. It makes me think of the Robert Frost poem, The Road Not Taken. Check out the whole poem at: http://www.poetryfoundation.org/poem/173536.  A poem where he reaches a fork in the road, takes the path that is less worn and used, but then thinks back and wonders what it would have been like to travel the other path. The last stanza of the poem reads:

Two roads diverged in a wood, and I

I took the one less traveled by,

And that has made all the difference.

I feel as though I am on that less travelled path. I am not sure if it is better or worse. What I am doing now is different than what I thought I would be doing at this point in my life. The friends I thought would be travelling with me are on the other path. I am making some new friends this way, but I miss what I have left behind and for what is now out of my reach ahead. I have been trying to identify what I have been feeling.  I knew envy was the wrong word because I am happy my friends and family are still healthy and happy in their lives and careers. I just wish my path did not feel so far away from theirs. I feel lonely sometimes for some of the fun and camaraderie we felt all going in such a similar direction.

I met a woman at during my swim time at the exercise pool and she told me she has lived in the small town where the pool in located for the last 50 years. We discussed all the places I have lived and the people I have met. I made friends wherever I went and left them there when I moved on to my next location. She told me she wondered what that experience would be like and could not imagine what it would be like to adjust to so many places and people. We decided one situation was not better than the other, that they were each unique .That our personal experiences made us who we are today.

I still can’t help but feel some days like I wish this path was headed in a different direction. I did not take this path by choice. Lung cancer chose me. But it is still a path that has led me to experiences that I would not want to change and some that I would.  Anyone on the path of life would have to admit to that. So, maybe I am not so very different after all. I am sure that even though this path was not my choice, there is a reason for it. I hope I will have the time to discover that reason.

The Blame Game

As I reread by first blog entry I was struck by how angry I still seem one year after my lung cancer diagnosis. What am I so mad about? How far does it go back? Who am I mad at? I am going to try and look at that. See what I can find out. Figure out what to do with that anger. Where to put it, how to resolve it, how to put it to rest.

Was I angry with the doctor? Yes, I was. She was arrogant, did not listen to me and actually shushed me, put up her index figure and told me we were discussing my diabetes and we would discuss the terrible problem I was having with my cough when SHE said we were ready to do that. She was focused on solving my out of control blood sugar problem and took it as a personal challenge to solve this concern. She did a Happy Dance when one of my readings showed a slight improvement one month. It was all about HER! It was all about being successful with this challenge. She cared nothing about me and my suffering. She was annoyed that her efforts were not bringing good results. I was intimidated by her. I sat in an exam room waiting for her one day for 2 ½ hours. By the time we left her staff had already left for the day. I had taken off unpaid time from work to be on time for my appointment.

At one point I called her after hours and told her my vomiting was so concerning that I wanted her to admit me to the hospital or give me a more viable suggestion. She prescribed a rectal suppository for nausea relief. In the end I took myself to the hospital and she was not involved. Since she was listed as the primary care doctor, a copy of the biopsy results were sent to her. She called me at my home, at 8pm at night, I was home alone, and she proceeded to tell me I had lung cancer. She had not seen me at the hospital, had not been consulted and had not performed the biopsy, but she wanted to be the one to tell me first. Like a 2^nd grader with a secret. She had no idea how I would react. She did not ask if I had someone home with me. She did not ask me if I was okay before she said good bye.

 After the pulmonary doctor gave me my results in his office the next morning I told him my primary care doctor had spilled the beans the night before, while I was home alone. I asked him if he would call her and let her know that her actions were inappropriate and that she NEVER do that to a patient again. I could tell he was very angry with her, even though he did not say so. He said his policy was always to meet with his patients and look them in the face while he gave them their biopsy results. To be sure they understood, to be sure they were okay, to be sure they knew what to do next. The last words I heard as my husband and I left the pulmonary doctor’s office that day were the low growl of him saying, “Get Dr. W******** on the phone,” Finally, someone who was concerned about me.

Was I angry at the cancer? As strange as it sounds, not really. Cancer is what it is; it does what it is meant to do. Sometimes you unconsciously give it human qualities or motivations. I talk about it using phrases like, “My cancer”, as though it were a pet, or a normal body organ. Other than being dismayed at the symptoms and damage that my cancer has caused my body, I don’t put a lot of blame or have a lot of anger towards cancer.

I was angry at myself for putting off getting a diagnosis sooner. The reasons for that were other sources of anger for me. My health insurance was the cheapest, lowest level, highest deductible insurance we could get. The plan is not even offered anymore. Because I had diabetes I could only get insurance with one company in the state of Michigan. Anyone with lower cost plans would not accept me because I had the pre-existing condition of diabetes. So, why was I shopping for a private insurance plan? I had worked nine years for a family owned grocery chain that sold out just before the economy took such a terrible turn. They all got out of the company as millionaires. The chain was purchased by Spartan Stores. I spent the next year learning new bookkeeping procedures, new computer systems, rules and regulations. 14-16 hour days were not uncommon in the early months of the transition. I gave everything I had to learn my new job, to be prepared.  I gave it my all and was beginning to be comfortable and confident.

Part way through the year I moved back to the store location closer to home for me. My 17 year old daughter was having a baby. I needed to have a more flexible schedule and be closer to home. In November we were given the news that our location would be sold to another grocery store owner. We thought as full time, long term employees, that we would be offered positions at other store locations to keep our benefits and seniority. We were wrong. I lost my health insurance, my life insurance and my vacation time. And Spartan Stores did not even blink an eye. The Human Resource manager at our mass involuntary dismissal even told me they would deny our claims for unemployment. They were just closing a store. I was too trusting to look into it. Was I angry? Yes, I was and I guess I still am. I have just pulled out the remaining 401K that I had left from working for the grocery chain. I need to use it for medical and personal expenses. Money is very tight. Cancer treatment is very expensive. Do I have any life insurance to help pay off bills after I am gone. No, it was so expensive to keep the policy I had had been paying into with the grocery chain, that I could not afford to keep it.

So, I moved on. I took a job on the west side of the state near our cottage (a remodeled single wide on 10 acres of woods and sand dunes). We wanted to retire out there, eventually and I hoped I could establish myself in the area. I got the opportunity to work for Whirlpool Corporation as a contract worker. I was told their intention was to hire permanent full time workers. Do a good job, prove yourself, be dependable….So, here was the opportunity to get benefits again! It meant living apart from my husband during the week. I was alone with my 2 dogs during the week.  Here was another chance for health care, life insurance in case ANYTHING happened, vacation time again! It was a couple of years since I had had a vacation. It meant HOPE for me. I put aside my loneliness and the pressures of learning to live alone. I learned to run a snow blower so I could clean out the driveway from those lake effect snow storms. I drove to work on a sheet of ice after an ice storm. Many folks that lived in town did not make it to work that day. But, that is the type of person I am. When I have a commitment, I keep it. I did everything I was asked to do at Whirlpool. I improved my skills; I became one of the best performers in my department. I went outside my comfort zone and got socially involved.

 During this time my cancer was creeping up on me. Silently spreading through my body. Making life harder and harder, although I did not know why. I have already talked about my experience with my doctor. My friends at work knew there was something wrong and suggested a new doctor or additional visits. I was worried about all the uncovered costs for my office visits and spending another “new patient fee” at a new doctor’s office. In April we (there were quite a number of contract workers at Whirlpool) were informed our contracts would not be renewed in October which would be the two year mark for me. So, was I angry? Yes, I was sick, I was beaten down and all I had worked for was being jerked out from under me. Again. So, how did this happen to me? How far back did this go? What choices had I made in life had brought me to this point? I do believe everything happens for a reason. That life is not random, that someone is looking out for me. So why did this seem so wrong all at once? I was losing my job, my chance of security and then a lung cancer diagnosis. Why had I not prepared myself for this? Was this my fault? Who could I blame? How would I cope? I could feel everything in my life that I had ever worked for or loved moving away from me at the speed of light. I felt my life was entirely out of my control. Was I angry about that? I think at that point I felt more defeated than angry. Lower than I had ever felt. Was I blaming myself? How had I become this person who was not good enough for Whirlpool to hire? I will leave that to think about another day.

And It Begins

So, last year on this day in August I sat in the office of a pulmonary specialist who had performed a bronchoscopy on me removing tissue for a biopsy. "You have lung cancer," he said to me. I was numb.

I had been sick for over a year not feeling well for 3 or 4 years. After that long, not feeling well became my normal. But about a year before my diagnosis I had symptoms I could not ignore: severe nausea, vomiting, severe cough, coughing up clots of thick mucus, loss of voice, severe pain in hip, thigh and shoulder, breathlessness at simple tasks, severe fatigue, diabetes out of control, hypertension out of control.

My primary care physician had been flailing along looking for answers, prescribing more medications for diabetes with no results and trying to refer me to a low income medical clinic because my insurance would not pay for the high priced diabetes medications she said would cure me. She told me I had tied her hands by not being able to afford the $650.00/month medication she wanted to prescribe. Her office was not equipped with Social Workers to help people like me with poor health insurance. She could not see what was right in front of her face. Severe cough, low grade fever. I was a NEVER smoker. Lung cancer never entered her mind. She finally ordered an x-ray and diagnosed bronchitis, she ordered a second round of steroids and antibiotics when first round did not clear the image on the x-ray of my lungs, unable to sleep and vomiting persistently. The last straw for me was passing out. I had my husband take me to an emergency room. They did x-rays, then CT scans. The ER doctor came in to see me. They would order a bronchoscopy and biopsy for the next morning. Probable lung cancer. Are you a smoker? Me: No, never...how could this happen.

The next morning was the biopsy. I don't know the date. But the 9th of August will never leave me. You have lung cancer. My life was changed forever. My job was over. Referrals to an oncologist, paperwork for a handicapped permit for my car, a move to my parents to be closer to my treatment center for chemotherapy...

I had known something was wrong, but this?

 I remember driving to work with plastic grocery bags next to me in case I had to vomit. I remember vomiting into a bag while driving to work. I remembering bring a fresh, clean shirt to change into in case I missed the bag. I remember thinking this is crazy! I am sick and I am going to work! I am vomiting into my wastebasket because I could not make it to the restroom at the other end of the building. Worrying about the housekeeping lady that would have to empty the basket. I always tied closed the bag and kept a fresh one to line it. How did I let things go so far?

Lung cancer symptoms happen slowly over time. They sneak up on you. Until you are so sick that you can no longer ignore them. The worst part is that my cancer was spread all through my body by this time. By the time I met with my oncologist 2 weeks, a CT scan, PET scan, MRI and x-rays later, I was Stage IV. "We can not cure you. We can only provide you palliative care. We will try to keep you comfortable and extend your life as much as we can." Comfortable? Chemotherapy is the next chapter. Comfortable? Hardly...