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Rachel's Cancer Blog

Optimism vs. Honesty

I was sitting on the edge of my bed, my wedding dress was on, my hair and makeup were done, and I was about to leave for my wedding ceremony. Before I could walk to my car, I had to catch my breath. It wasn’t like wedding jitters, it was more like when I’d have asthma attacks as a kid, but it didn’t feel like asthma. I gripped my sides at the bottom of my rib cage. I took deep breaths in, breathed out. My right hand expanded on the inhales with my ribs, but my left hand stayed relaxed. It crossed my mind at that time that I might have a collapsed lung, but I had important things to do. I decided to push the problem to the back of my mind. I didn’t even tell my fiancé until the next day because I didn’t want to spoil our happy occasion.

The ceremony and reception were wonderful, and I was so busy I barely noticed feeling out of breath. My grandparents walked me down the aisle, my Mother-In-Law played guitar as I went, and the whole thing felt like a comfortable party. It was joyous, free of problems. It was exactly how I wanted it to be. I was happy, and it didn’t matter that my lung might be collapsed. I was not hurting, so it was easy to ignore the problem, sort of. Admittedly, I’d always been good at putting my problems on the back burner. To that point in my life, I’d been a blind optimist. It was a trait that had protected me through some rough years in my teens. Through my parents’ rough divorce and their problems with addiction, it had kept me balanced and disconnected enough so I could focus on school and life. It kept me from being utterly depressed. It kept me detached from my emotions. Now, however, the worry was beginning to sink in, and optimism wasn’t going to heal a collapsed lung. What was wrong? I kept feeling my rib cage, hoping that it would act normal. I could get along with one lung for the weekend- hell, people can live with one lung. I was the calm one in the family who did not cause much trouble; this was my role. Why stop now? I was the diplomat, the cool head, the one with a sunny outlook. Now, my optimism was being challenged, and that did not fit my personality. I finally told my new husband about my lung, and he was understandably upset I hadn’t told him sooner. I insisted I wouldn’t go to the doctor that day, because that was a horrible start to a marriage. I was prepared to wait forever, to see if the issue would resolve itself. I might not have even gone, but my husband talked me into going.

We went to the Emergency Room, the one I was most familiar with. I went there in the second grade to get my appendix taken out, when I needed stitches in my thumb after I had cut it while slicing apples, and when I was 18, when my cornea got scratched by someone falling out of a mosh pit at a show on Halloween. I was a candy striper at that hospital when I was twelve, I cleaned stretchers there. Now I was there, lying on one of those stretchers, stomach sinking as I was being told by doctors that they saw a shadow on my lung in the X-Ray. They were incredibly nice, and I could tell by their gentleness that something was truly wrong. They listed possibilities, but gave no firm answers, and asked me about specific symptoms I’d been having. The word cancer was thrown around, and they were taking a biopsy of my lymph node, but it would be a couple days before they had an answer for me. In the meantime, they were going to drain my lung.

Having a “chest tap” sounded like a dreadful thing, but it’s not. When you need one, it feels so relieving to feel the lung pop back open, taking the place of the fluid being drained. My husband sat in front of me as I leaned over a table. The doctor worked behind me, and talked with us as if we were friends. The room lights stayed low, except for one spotlight aimed at my back. My back was numbed up before the doctor inserted the needle to drain the fluid. It did not hurt. My husband held my hands and cracked jokes to make me feel less afraid. I could feel the fluid leaving my chest, and it felt good. My lung slowly grew in my chest. I could breath, and it was a relief. I felt relief. Confronting my problem was a relief. Laughing at how much fluid had come out of my chest with the doctor was a relief. Being in the hospital, where people were helping me, was a relief. Being honest about my health and my problems was a relief. My husband’s genuine concern and lack of disappointment at the fuss I was causing him was a relief.

 After being transferred to a new floor, I met a new doctor, an oncologist. He asked me if I’d had specific symptoms lately, and they were exactly what I’d been experiencing. For six months I’d had strange symptoms. Yes, I’d been itching, yes, I’d been sweating profusely at night, and yes, I was tired all the time. Yes, I had been sick with a lot of colds and fevers that year, which I’d chalked up to working around young children. Yes, I had a persistent swollen lymph node on my neck- but my doctor’s office had said it was alright. I’d been seen at a doctor’s office about these symptoms, and had been getting treated for anxiety only. My Nurse Practitioner didn’t suspect that I had anything else going on, and I didn’t want to seem like a hypochondriac by complaining more. The bloodwork always came back normal, so she thought I was a healthy 23-year-old suffering from anxiety, and I believed her. Pushing the issue wasn’t my style, after all. Truly, I understand now why she was missing the connection between the symptoms. The symptoms are vague, and belong to a lot of diseases and illnesses, anxiety being one of them. Honestly, I’d been excusing these symptoms a lot, too, and probably tried to disguise their persistence. I had thought the symptoms would resolve with anxiety medication, but lying in the hospital bed now, I realized I had been willfully ignorant, young and naive. I realized that blind optimism would not serve me well anymore going forward.

We were newlyweds, and we spent our honeymoon in the hospital. The nurses found out and treated us to a hotel experience; they had the kitchen make us steaks and a “wedding cake,” they decorated my room, they pushed an extra bed into the room for my husband. Truly, I felt safe again, because I felt so cared for. We spent a few days in our honeymoon suite before I got a firm diagnosis; it was Hodgkin’s Lymphoma. Hodgkin’s is a rare type of cancer that may result from a gene mutation after exposure to the Epstein Barr virus, which causes Mononucleosis infection. It caused a tumor in my chest to form. The tumor was large enough to clog the normal drainage of lymph, which instead collected in the space around my lungs- thus the collapsed lung. I met my new oncologist, a personable guy who I instantly trusted. He said I would go through six months of chemotherapy and radiation, and I would see him every other week in his office.

It was devastating to have the diagnosis, but my mysterious symptoms were related, the truth was out in the open, and my problem had a name now. The problem I’d been trying to ignore had a name, and I stood a good chance of beating it. Although I would still be in the hospital for another week, and my life’s course changed forever, optimism and normalcy crept back in when I had my answer. My optimism was not blind anymore, it would be functional and allow for honesty, too. I could continue building a new life with my husband and we looked forward to being together a long time. Nearly ten years later, and that is still true.

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Optimism vs. Honesty

I was sitting on the edge of my bed, my wedding dress was on, my hair and makeup were done, and I was about to leave for my wedding ceremony. Before I could walk to my car, I had to catch my breath. It wasn’t like wedding jitters, it was more like when I’d have asthma attacks as a kid, but it didn’t feel like asthma. I gripped my sides at the bottom of my rib cage. I took deep breaths in, breathed out. My right hand expanded on the inhales with my ribs, but my left hand stayed relaxed. It crossed my mind at that time that I might have a collapsed lung, but I had important things to do. I decided to push the problem to the back of my mind. I didn’t even tell my fiancé until the next day because I didn’t want to spoil our happy occasion.

The ceremony and reception were wonderful, and I was so busy I barely noticed feeling out of breath. My grandparents walked me down the aisle, my Mother-In-Law played guitar as I went, and the whole thing felt like a comfortable party. It was joyous, free of problems. It was exactly how I wanted it to be. I was happy, and it didn’t matter that my lung might be collapsed. I was not hurting, so it was easy to ignore the problem, sort of. Admittedly, I’d always been good at putting my problems on the back burner. To that point in my life, I’d been a blind optimist. It was a trait that had protected me through some rough years in my teens. Through my parents’ rough divorce and their problems with addiction, it had kept me balanced and disconnected enough so I could focus on school and life. It kept me from being utterly depressed. It kept me detached from my emotions. Now, however, the worry was beginning to sink in, and optimism wasn’t going to heal a collapsed lung. What was wrong? I kept feeling my rib cage, hoping that it would act normal. I could get along with one lung for the weekend- hell, people can live with one lung. I was the calm one in the family who did not cause much trouble; this was my role. Why stop now? I was the diplomat, the cool head, the one with a sunny outlook. Now, my optimism was being challenged, and that did not fit my personality. I finally told my new husband about my lung, and he was understandably upset I hadn’t told him sooner. I insisted I wouldn’t go to the doctor that day, because that was a horrible start to a marriage. I was prepared to wait forever, to see if the issue would resolve itself. I might not have even gone, but my husband talked me into going.

We went to the Emergency Room, the one I was most familiar with. I went there in the second grade to get my appendix taken out, when I needed stitches in my thumb after I had cut it while slicing apples, and when I was 18, when my cornea got scratched by someone falling out of a mosh pit at a show on Halloween. I was a candy striper at that hospital when I was twelve, I cleaned stretchers there. Now I was there, lying on one of those stretchers, stomach sinking as I was being told by doctors that they saw a shadow on my lung in the X-Ray. They were incredibly nice, and I could tell by their gentleness that something was truly wrong. They listed possibilities, but gave no firm answers, and asked me about specific symptoms I’d been having. The word cancer was thrown around, and they were taking a biopsy of my lymph node, but it would be a couple days before they had an answer for me. In the meantime, they were going to drain my lung.

Having a “chest tap” sounded like a dreadful thing, but it’s not. When you need one, it feels so relieving to feel the lung pop back open, taking the place of the fluid being drained. My husband sat in front of me as I leaned over a table. The doctor worked behind me, and talked with us as if we were friends. The room lights stayed low, except for one spotlight aimed at my back. My back was numbed up before the doctor inserted the needle to drain the fluid. It did not hurt. My husband held my hands and cracked jokes to make me feel less afraid. I could feel the fluid leaving my chest, and it felt good. My lung slowly grew in my chest. I could breath, and it was a relief. I felt relief. Confronting my problem was a relief. Laughing at how much fluid had come out of my chest with the doctor was a relief. Being in the hospital, where people were helping me, was a relief. Being honest about my health and my problems was a relief. My husband’s genuine concern and lack of disappointment at the fuss I was causing him was a relief.

After being transferred to a new floor, I met a new doctor, an oncologist. He asked me if I’d had specific symptoms lately, and they were exactly what I’d been experiencing. For six months I’d had strange symptoms. Yes, I’d been itching, yes, I’d been sweating profusely at night, and yes, I was tired all the time. Yes, I had been sick with a lot of colds and fevers that year, which I’d chalked up to working around young children. Yes, I had a persistent swollen lymph node on my neck- but my doctor’s office had said it was alright. I’d been seen at a doctor’s office about these symptoms, and had been getting treated for anxiety only. My Nurse Practitioner didn’t suspect that I had anything else going on, and I didn’t want to seem like a hypochondriac by complaining more. The bloodwork always came back normal, so she thought I was a healthy 23-year-old suffering from anxiety, and I believed her. Pushing the issue wasn’t my style, after all. Truly, I understand now why she was missing the connection between the symptoms. The symptoms are vague, and belong to a lot of diseases and illnesses, anxiety being one of them. Honestly, I’d been excusing these symptoms a lot, too, and probably tried to disguise their persistence. I had thought the symptoms would resolve with anxiety medication, but lying in the hospital bed now, I realized I had been willfully ignorant, young and naive. I realized that blind optimism would not serve me well anymore going forward.

We were newlyweds, and we spent our honeymoon in the hospital. The nurses found out and treated us to a hotel experience; they had the kitchen make us steaks and a “wedding cake,” they decorated my room, they pushed an extra bed into the room for my husband. Truly, I felt safe again, because I felt so cared for. We spent a few days in our honeymoon suite before I got a firm diagnosis; it was Hodgkin’s Lymphoma. Hodgkin’s is a rare type of cancer that may result from a gene mutation after exposure to the Epstein Barr virus, which causes Mononucleosis infection. It caused a tumor in my chest to form. The tumor was large enough to clog the normal drainage of lymph, which instead collected in the space around my lungs- thus the collapsed lung. I met my new oncologist, a personable guy who I instantly trusted. He said I would go through six months of chemotherapy and radiation, and I would see him every other week in his office.

It was devastating to have the diagnosis, but my mysterious symptoms were related, the truth was out in the open, and my problem had a name now. The problem I’d been trying to ignore had a name, and I stood a good chance of beating it. Although I would still be in the hospital for another week, and my life’s course changed forever, optimism and normalcy crept back in when I had my answer. My optimism was not blind anymore, it would be functional and allow for honesty, too. I could continue building a new life with my husband and we looked forward to being together a long time. Nearly ten years later, and that is still true.

Louise likes this post.
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Rachel, you are such a prolific writer, that all your story within gave pause to a running movie with commentary. I didn't cheat by going to the bottom of the page, so I was always in suspense at each turn of the sentences. It must be that ETERNAL OPTIMISM from your youthful survival that has been the curing factor in staying around for these 10 years. You were diagnosed with a cancer that has less odds than most, but somehow it's your spirit to maintain calm, unyielding to adversity that has been your major cancer fighter, in my opinion. Of course having a medical Team that is always pushing the envelope is very important as well. Thank you for sharing that account as I'm sure there are many here who have had a similar diagnosis and would want to know there is LIFE and health beyond the Cancer Call.
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Vital Info

Posts

March 17, 2009

Denver, Colorado

January 4, 1985

Cancer Survivor

Cancer Info

Hodgkins Lymphoma

August, 2008

Stage 4

Yes

How hard it is to get rid of.

To be honest about how I'm feeling, to take good care of my self

After successful radiation to the chest, doctors' found it had metastasized to my abdominal lymph nodes.

Yup, it's staying, I think.

Most notably, I was itching horribly, and I lost 25+ lbs. Also, I wasn't sleeping and had vivid nightmares and night sweats when I did. I had a lumpy neck, fatigue, a cough that lasted for months, and finally, my left lung had collapsed (which lead to the diagnosis).

Received 5 weeks of localized radiation to the chest

Trying to shrink tumors down to nil before going ahead with stem cell transplant. I now will be needing an outside donor transplant.

Brentuximab (2012-2015)- Caused me to stay alive and feel somewhat normal again, and a little tingling in my feet. Opdivo (2016 to present)- No side effects, other than I'm still alive

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